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Neuroscientists and architects are using this enormous laboratory to make buildings better

13 September 2024 at 11:00

Have you ever found yourself lost in a building that felt impossible to navigate? Thoughtful building design should center on the people who will be using those buildings. But that’s no mean feat.

It’s not just about navigation, either. Just think of an office that left you feeling sleepy or unproductive, or perhaps a health center that had a less-than-reviving atmosphere. A design that works for some people might not work for others. People have different minds and bodies, and varying wants and needs. So how can we factor them all in?

To answer that question, neuroscientists and architects are joining forces at an enormous laboratory in East London—one that allows researchers to build simulated worlds. In this lab, scientists can control light, temperature, and sound. They can create the illusion of a foggy night, or the tinkle of morning birdsong.

And they can study how volunteers respond to these environments, whether they be simulations of grocery stores, hospitals, pedestrian crossings, or schools. That’s how I found myself wandering around a fake art gallery, wearing a modified baseball cap with a sensor that tracked my movements.

I first visited the Person-Environment-Activity Research Lab, referred to as PEARL, back in July. I’d been chatting to Hugo Spiers, a neuroscientist based at University College London, about the use of video games to study how people navigate. Spiers had told me he was working on another project: exploring how people navigate a lifelike environment, and how they respond during evacuations (which, depending on the situation, could be a matter of life or death).

For their research, Spiers and his colleagues set up what they call a “mocked-up art gallery” within PEARL. The center in its entirety is pretty huge as labs go, measuring around 100 meters in length and 40 meters across, with 10-meter-high ceilings in places. There’s no other research center in the world like this, Spiers told me.

The gallery setup looked a little like a maze from above, with a pathway created out of hanging black sheets. The exhibits themselves were videos of dramatic artworks that had been created by UCL students.

When I visited in July, Spiers and his colleagues were running a small pilot study to trial their setup. As a volunteer participant, I was handed a numbered black cap with a square board on top, marked with a large QR code. This code would be tracked by cameras above and around the gallery. The cap also carried a sensor, transmitting radio signals to devices around the maze that could pinpoint my location within a range of 15 centimeters.

At first, all the volunteers (most of whom seemed to be students) were asked to explore the gallery as we would any other. I meandered around, watching the videos, and eavesdropping on the other volunteers, who were chatting about their research and upcoming dissertation deadlines. It all felt pretty pleasant and calm.

That feeling dissipated in the second part of the experiment, when we were each given a list of numbers, told that each one referred to a numbered screen, and informed that we had to visit all the screens in the order in which they appeared on our lists. “Good luck, everybody,” Spiers said.

Suddenly everyone seemed to be rushing around, slipping past each other and trying to move quickly while avoiding collisions. “It’s all got a bit frantic, hasn’t it?” I heard one volunteer comment as I accidentally bumped into another. I hadn’t managed to complete the task by the time Spiers told us the experiment was over. As I walked to the exit, I noticed that some people were visibly out of breath.

The full study took place on Wednesday, September 11. This time, there were around 100 volunteers (I wasn’t one of them). And while almost everyone was wearing a modified baseball cap, some had more complicated gear, including EEG caps to measure brainwaves, or caps that use near-infrared spectroscopy to measure blood flow in the brain. Some people were even wearing eye-tracking devices that monitored which direction they were looking.

“We will do something quite remarkable today,” Spiers told the volunteers, staff, and observers as the experiment started. Taking such detailed measurements from so many individuals in such a setting represented “a world first,” he said.

I have to say that being an observer was much more fun than being a participant. Gone was the stress of remembering instructions and speeding around a maze. Here in my seat, I could watch as the data collected from the cameras and sensors was projected onto a screen. The volunteers, represented as squiggly colored lines, made their way through the gallery in a way that reminded me of the game Snake.

The study itself was similar to the pilot study, although this time the volunteers were given additional tasks. At one point, they were given an envelope with the name of a town or city in it, and asked to find others in the group who had been given the same one. It was fascinating to see the groups form. Some had the names of destination cities like Bangkok, while others had been assigned fairly nondescript English towns like Slough, made famous as the setting of the British television series The Office. At another point, the volunteers were asked to evacuate the gallery from the nearest exit.

The data collected in this study represents something of a treasure trove for researchers like Spiers and his colleagues. The team is hoping to learn more about how people navigate a space, and whether they move differently if they are alone or in a group. How do friends and strangers interact, and does this depend on whether they have certain types of material to bond over? How do people respond to evacuations—will they take the nearest exit as directed, or will they run on autopilot to the exit they used to enter the space in the first place?

All this information is valuable to neuroscientists like Spiers, but it’s also useful to architects like his colleague Fiona Zisch, who is based at UCL’s Bartlett School of Architecture. “We do really care about how people feel about the places we design for them,” Zisch tells me. The findings can guide not only the construction of new buildings, but also efforts to modify and redesign existing ones.

PEARL was built in 2021 and has already been used to help engineers, scientists, and architects explore how neurodivergent people use grocery stores, and the ideal lighting to use for pedestrian crossings, for example. Zisch herself is passionate about creating equitable spaces—particularly for health and education—that everyone can make use of in the best possible way.

In the past, models used in architecture have been developed with typically built, able-bodied men in mind. “But not everyone is a 6’2″ male with a briefcase,” Zisch tells me. Age, gender, height, and a range of physical and psychological factors can all influence how a person will use a building. “We want to improve not just the space, but the experience of the space,” says Zisch. Good architecture isn’t just about creating stunning features; it’s about subtle adaptations that might not even be noticeable to most people, she says.

The art gallery study is just the first step for researchers like Zisch and Spiers, who plan to explore other aspects of neuroscience and architecture in more simulated environments at PEARL. The team won’t have results for a while yet. But it’s a fascinating start. Watch this space.


Now read the rest of The Checkup

Read more from MIT Technology Review’s archive

Brain-monitoring technology has come a long way, and tech designed to read our minds and probe our memories is already being used. Futurist and legal ethicist Nita Farahany explained why we need laws to protect our cognitive liberty in a previous edition of The Checkup.

Listening in on the brain can reveal surprising insights into how this mysterious organ works. One team of neuroscientists found that our brains seem to oscillate between states of order and chaos.

Last year, MIT Technology Review published our design issue of the magazine. If you’re curious, this piece on the history and future of the word “design,” by Nicholas de Monchaux, head of architecture at MIT, might be a good place to start

Design covers much more than buildings, of course. Designers are creating new ways for users of prosthetic devices to feel more comfortable in their own skin—some of which have third thumbs, spikes, or “superhero skins.”

Achim Menges is an architect creating what he calls “self-shaping” structures with wood, which can twist and curve with changes in humidity. His approach is a low-energy way to make complex curved architectures, Menges told John Wiegand.

From around the web

Scientists are meant to destroy research samples of the poliovirus, as part of efforts to eradicate the disease it causes. But lab leaks of the virus may be more common than we’d like to think. (Science)

Neurofeedback allows people to watch their own brain activity in real time, and learn to control it. It could be a useful way to combat the impacts of stress. (Trends in Neurosciences)

Microbes, some of which cause disease in people, can travel over a thousand miles on wind, researchers have shown. Some appear to be able to survive their journey. (The Guardian)

Is the X chromosome involved in Alzheimer’s disease? A study of over a million people suggests so. (JAMA Neurology)

A growing number of men are paying thousands of dollars a year for testosterone therapies that are meant to improve their physical performance. But some are left with enlarged breasts, shrunken testicles, blood clots, and infertility. (The Wall Street Journal)

Preparing for the unknown: A guide to future-proofing imaging IT

In an era of unprecedented technological advancement, the health-care industry stands at a crossroad. As health expenditure continues to outpace GDP in many countries, health-care executives grapple with crucial decisions on investment prioritization for digitization, innovation, and digital transformation. The imperative to provide high-quality, patient-centric care in an increasingly digital world has never been more pressing. At the forefront of this transformation is imaging IT—a critical component that’s evolving to meet the challenges of modern health care.

The future of imaging IT is characterized by interconnected systems, advanced analytics, robust data security, AI-driven enhancements, and agile infrastructure. Organizations that embrace these trends will be well-positioned to thrive in the changing health-care landscape. But what exactly does this future look like, and how can health-care providers prepare for it?

Networked care models: The new paradigm

The adoption of networked care models is set to revolutionize health-care delivery. These models foster collaboration among stakeholders, making patient information readily available and leading to more personalized and efficient care. As we move forward, expect to see health-care organizations increasingly investing in technologies that enable seamless data sharing and interoperability.

Imagine a scenario where a patient’s entire medical history, including imaging data from various specialists, is instantly accessible to any authorized health-care provider. This level of connectivity not only improves diagnosis and treatment but also enhances the overall patient experience.

Data integration and analytics: Unlocking insights

True data integration is becoming the norm in health care. Robust integrated image and data management solutions (IDM) are consolidating patient data from diverse sources. But the real game-changer lies in the application of advanced analytics and AI to this treasure trove of information.

By leveraging these technologies, medical professionals can extract meaningful insights from complex data sets, leading to quicker and more accurate diagnoses and treatment decisions. The potential for improving patient outcomes through data-driven decision-making is immense.

A case in point is the implementation of Syngo Carbon Image and Data Management (IDM) at Tirol Kliniken GmbH in Innsbruck, Austria. This solution consolidates all patient-centric data points in one place, including different image and photo formats, DICOM CDs, and digitalized video sources from endoscopy or microscopy. The system digitizes all documents in their raw formats, enabling the distribution of native, actionable data throughout the enterprise.

Data privacy and edge computing: Balancing innovation and security

As health care becomes increasingly data-driven, concerns about data privacy remain paramount. Enter edge computing—a solution that enables the processing of sensitive patient data locally, reducing the risk of data breaches during processing and transmission.

This approach is crucial for health-care facilities aiming to maintain patient trust while adopting advanced technologies. By keeping data processing close to the source, health-care providers can leverage cutting-edge analytics without compromising on security.

Workflow integration and AI: Enhancing efficiency and accuracy

The integration of AI into medical imaging workflows is set to dramatically improve efficiency, accuracy, and the overall quality of patient care. AI-powered solutions are becoming increasingly common, reducing the burden of repetitive tasks and speeding up diagnosis.

From automated image analysis to predictive modeling, AI is transforming every aspect of the imaging workflow. This not only improves operational efficiency but also allows health-care professionals to focus more on patient care and complex cases that require human expertise.

A quantitative analysis at the Medical University of South Carolina demonstrates the impact of AI integration. With the support of deep learning algorithms fully embedded in the clinical workflow, cardiothoracic radiologists exhibited a reduction in chest CT interpretation times of 22.1% compared to workflows without AI support.

Virtualization: The key to agility

To future-proof their IT infrastructure, health-care organizations are turning to virtualization. This approach allows for modularization and flexibility, making it easier to adapt to rapidly evolving technologies such as AI-driven diagnostics.

Container technology is playing a pivotal role in optimizing resource utilization and scalability. By embracing virtualization, health-care providers can ensure their IT systems remain agile and responsive to changing needs.

Standardization and compliance: Ensuring long-term compatibility

As imaging IT systems evolve, adherence to industry standards and compliance requirements remains crucial. These systems need to seamlessly interact with Electronic Health Records (EHRs), medical devices, and other critical systems.

This adherence ensures long-term compatibility and the ability to accommodate emerging technologies. It also facilitates smoother integration of new solutions into existing IT ecosystems, reducing implementation challenges and costs.

Real-world success stories

The benefits of these technologies are not theoretical—they are being realized in health-care organizations around the world. For instance, the virtualization strategy implemented at University Hospital Essen (UME), one of Germany’s largest university hospitals, has dramatically improved the hospital’s ability to manage increasing data volumes and applications. UME’s critical clinical information systems now run on modular and virtualized systems, allowing experts to design and use innovative solutions, including AI tools that automate tasks previously done manually by IT and medical staff.

Similarly, the PANCAIM project leverages edge computing for pancreatic cancer detection. This EU-funded initiative uses Siemens Healthineers’ edge computing approach to develop and validate AI algorithms. At Karolinska Institutet, Sweden, an algorithm was implemented for a real pancreatic cancer case, ensuring sensitive patient data remains within the hospital while advancing AI validation in clinical settings.

Another innovative approach is the concept of a Common Patient Data Model (CPDM). This standardized framework defines how patient data is organized, stored, and exchanged across different health-care systems and platforms, addressing interoperability challenges in the current health-care landscape.

The road ahead: Continuous innovation

As we look to the future, it’s clear that technological advancements in radiology will continue at a rapid pace. To stay competitive and provide the best patient care, health-care organizations must prioritize ongoing innovation and the adoption of new technologies.

This includes not only IT systems but also medical devices and treatment methodologies. The health-care providers who embrace this ethos of continuous improvement will be best positioned to navigate the challenges and opportunities that lie ahead.

In conclusion, the future of imaging IT is bright, promising unprecedented levels of efficiency, accuracy, and patient-centricity. By embracing networked care models, leveraging advanced analytics and AI, prioritizing data security, and maintaining agile IT infrastructure, health-care organizations can ensure they’re prepared for whatever the future may hold.

The journey towards future-proof imaging IT may seem daunting, but it’s a necessary evolution in our quest to provide the best possible health care. As we stand on the brink of this new era, one thing is clear: the future of health care is digital, data-driven, and more connected than ever before.

If you want to learn more, you can find more information from Siemens Healthineers.

Syngo Carbon consists of several products which are (medical) devices in their own right. Some products are under development and not commercially available. Future availability cannot be ensured.

The results by Siemens Healthineers customers described herein are based on results that were achieved in the customer’s unique setting. Since there is no “typical” hospital and many variables exist (e.g., hospital size, case mix, level of IT adoption), it cannot be guaranteed that other customers will achieve the same results.

This content was produced by Siemens Healthineers. It was not written by MIT Technology Review’s editorial staff.

Maybe you will be able to live past 122

26 August 2024 at 13:00

The UK’s Office of National Statistics has an online life expectancy calculator. Enter your age and sex, and the website will, using national averages, spit out the age at which you can expect to pop your clogs. For me, that figure is coming out at 88 years old.

That’s not too bad, I figure, given that globally, life expectancy is around 73. But I’m also aware that this is a lowball figure for many in the longevity movement, which has surged in recent years. When I interview a scientist, doctor, or investor in the field, I always like to ask about personal goals. I’ve heard all sorts. Some have told me they want an extra decade of healthy life. Many want to get to 120, close to the current known limit of human age. Others have told me they want to stick around until they’re 200. And some have told me they don’t want to put a number on it; they just want to live for as long as they possibly can—potentially indefinitely.

How far can they go? This is a good time to ask the question. The longevity scene is having a moment, thanks to a combination of scientific advances, public interest, and an unprecedented level of investment. A few key areas of research suggest that we might be able to push human life spans further, and potentially reverse at least some signs of aging.

Take, for example, the concept of cellular reprogramming. Nobel Prize–winning research has shown it is possible to return adult cells to a “younger” state more like that of a stem cell. Billions of dollars have been poured into trying to transform this discovery into a therapy that could wind back the age of a person’s cells and tissues, potentially restoring some elements of youth.

Many other avenues are being explored, including a diabetes drug that could have broad health benefits; drugs based on a potential anti-aging compound discovered in the soil of Rapa Nui (Easter Island); attempts to rejuvenate the immune system; gene therapies designed to boost muscle or extend the number of times our cells can divide; and many, many more. Other researchers are pursuing ways to clear out the aged, worn-out cells in our bodies. These senescent cells appear to pump out chemicals that harm the surrounding tissues. Around eight years ago, scientists found that mice cleared of senescent cells lived 25% longer than untreated ones. They also had healthier hearts and took much longer to develop age-related diseases like cancer and cataracts. They even looked younger.

Unfortunately, human trials of senolytics—drugs that target senescent cells—haven’t been quite as successful. Unity Biotechnology, a company cofounded by leading researchers in the field, tested such a drug in people with osteoarthritis. In 2020, the company officially abandoned that drug after it was found to be no better than a placebo in treating the condition.

That doesn’t mean we won’t one day figure out how to treat age-related diseases, or even aging itself, by targeting senescent cells. But it does illustrate how complicated the biology of aging is. Researchers can’t even agree on what the exact mechanisms of aging are and which they should be targeting. Debates continue to rage over how long it’s possible for humans to live—and whether there is a limit at all.

Still, we are getting better at testing potential therapies in more humanlike models. We’re finding new and improved ways to measure the aging process itself. The X Prize is offering $101 million to researchers who find a way to restore at least 10 years of “muscle, cognitive, and immune function” in 65- to 80-year-olds with a treatment that takes one year or less to administer. Given that the competition runs for seven years, it’s a tall order; Jamie Justice, executive director of the X Prize’s health-span domain, told me she initially fought back on the challenging goal and told the organization’s founder, Peter Diamandis, there was “no way” researchers could achieve it. But we’ve seen stranger things in science. 

Some people are banking on this kind of progress. Not just the billionaires who have already spent millions of dollars and a significant chunk of their time on strategies that might help them defy aging, but also the people who have opted for cryopreservation. There are hundreds of bodies in storage—bodies of people who believed they might one day be reanimated. For them, the hopes are slim. I asked Justice whether she thought they stood a chance at a second life. “Honest answer?” she said. “No.”

It looks likely that something will be developed in the coming decades that will help us live longer, in better health. Not an elixir for eternal life, but perhaps something—or a few somethings—that can help us stave off some of the age-related diseases that tend to kill a lot of us. Such therapies may well push life expectancy up. I don’t feel we need a massive increase, but perhaps I’ll feel differently when I’m approaching 88.

The ONS website gives me a one in four chance of making it to 96, and a one in 10 chance of seeing my 100th birthday. To me, that sounds like an impressive number—as long as I get there in semi-decent health.

I’d still be a long way from the current record of 122 years. But it might just be that there are some limitations we must simply come to terms with—as individuals and in society at large. In a 2017 paper making the case for a limit to the human life span, scientists Jan Vijg and Eric Le Bourg wrote something that has stuck with me—and is worth bearing in mind when considering the future of human longevity: “A species does not need to live for eternity to thrive.” 

Tech that measures our brainwaves is 100 years old. How will we be using it 100 years from now?

22 August 2024 at 19:00

This article first appeared in The Checkup, MIT Technology Review’s weekly biotech newsletter. To receive it in your inbox every Thursday, and read articles like this first, sign up here.

This week, we’re acknowledging a special birthday. It’s 100 years since EEG (electroencephalography) was first used to measure electrical activity in a person’s brain. The finding was revolutionary. It helped people understand that epilepsy was a neurological disorder as opposed to a personality trait, for one thing (yes, really).

The fundamentals of EEG have not changed much over the last century—scientists and doctors still put electrodes on people’s heads to try to work out what’s going on inside their brains. But we’ve been able to do a lot more with the information that’s collected.

We’ve been able to use EEG to learn more about how we think, remember, and solve problems. EEG has been used to diagnose brain and hearing disorders, explore how conscious a person might be, and even allow people to control devices like computers, wheelchairs, and drones.

But an anniversary is a good time to think about the future. You might have noticed that my colleagues and I are currently celebrating 125 years of MIT Technology Review by pondering the technologies the next 125 years might bring. What will EEG allow us to do 100 years from now?

First, a quick overview of what EEG is and how it works. EEG involves placing electrodes on the top of someone’s head, collecting electrical signals from brainwaves, and feeding these to a computer for analysis. Today’s devices often resemble swimming caps. They’re very cheap compared with other types of brain imaging technologies, such as fMRI scanners, and they’re pretty small and portable.

The first person to use EEG in people was Hans Berger, a German psychiatrist who was fascinated by the idea of telepathy. Berger developed EEG as a tool to measure “psychic energy,” and he carried out his early research—much of it on his teenage son—in secret, says Faisal Mushtaq, a cognitive neuroscientist at the University of Leeds in the UK. Berger was, and remains, a controversial figure owing to his unclear links with Nazi regime, Mushtaq tells me.

But EEG went on to take the neuroscience world by storm. It has become a staple of neuroscience labs, where it can be used on people of all ages, even newborns. Neuroscientists use EEG to explore how babies learn and think, and even what makes them laugh. In my own reporting, I’ve covered the use of EEG to understand the phenomenon of lucid dreaming, to reveal how our memories are filed away during sleep, and to allow people to turn on the TV by thought alone.   

EEG can also serve as a portal into the minds of people who are otherwise unable to communicate. It has been used to find signs of consciousness in people with unresponsive wakefulness syndrome (previously called a “vegetative state”). The technology has also allowed people paralyzed with amyotrophic lateral sclerosis (ALS) to communicate by thought and tell their family members they are happy.

So where do we go from here? Mushtaq, along with Pedro Valdes-Sosa at the University of Electronic Science and Technology of China in Chengdu and their colleagues, put the question to 500 people who work with EEG, including neuroscientists, clinical neurophysiologists, and brain surgeons. Specifically, with the help of ChatGPT, the team generated a list of predictions, which ranged from the very likely to the somewhat fanciful. Each of the 500 survey responders was asked to estimate when, if at all, each prediction might be likely to pan out.  

Some of the soonest breakthroughs will be in sleep analysis, according to the responders. EEG is already used to diagnose and monitor sleep disorders—but this is set to become routine practice in the next decade. Consumer EEG is also likely to take off in the near future, potentially giving many of us the opportunity to learn more about our own brain activity, and how it corresponds with our wellbeing. “Perhaps it’s integrated into a sort of baseball cap that you wear as you walk around, and it’s connected to your smartphone,” says Mushtaq. EEG caps like these have already been trialed on employees in China and used to monitor fatigue in truck drivers and mining workers, for example.

For the time being, EEG communication is limited to the lab or hospital, where studies focus on the technology’s potential to help people who are paralyzed, or who have disorders of consciousness. But that is likely to change in the coming years, once more clinical trials have been completed. Survey respondents think that EEG could become a primary tool of communication for individuals like these in the next 20 years or so.

At the other end of the scale is what Mushtaq calls the “more fanciful” application—the idea of using EEG to read people’s thoughts, memories, and even dreams.

Mushtaq thinks this is a “relatively crazy” prediction—one that’s a long, long way from coming to pass considering we don’t yet have a clear picture of how and where our memories are formed. But it’s not completely science fiction, and some respondents predict the technology could be with us in around 60 years.

Artificial intelligence will probably help neuroscientists squeeze more information from EEG recordings by identifying hidden patterns in brain activity. And it is already being used to turn a person’s thoughts into written words, albeit with limited accuracy. “We’re on the precipice of this AI revolution,” says Mushtaq.

These kinds of advances will raise questions over our right to mental privacy and how we can protect our thoughts. I talked this over with Nita Farahany, a futurist and legal ethicist at Duke University in Durham, North Carolina, last year. She told me that while brain data itself is not thought, it can be used to make inferences about what a person is thinking or feeling. “The only person who has access to your brain data right now is you, and it is only analyzed in the internal software of your mind,” she said. “But once you put a device on your head … you’re immediately sharing that data with whoever the device manufacturer is, and whoever is offering the platform.”

Valdes-Sosa is optimistic about the future of EEG. Its low cost, portability, and ease of use make the technology a prime candidate for use in poor countries with limited resources, he says; he has been using it in his research since 1969. (You can see what his set up looked like in 1970 in the image below!) EEG should be used to monitor and improve brain health around the world, he says: “It’s difficult … but I think it could happen in the future.” 

photo from the 1970s of two medical professionals facing an eeg machine
PEDRO VALDES-SOSA

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Read more from MIT Technology Review’s archive

You can read the full interview with Nita Farahany, in which she describes some decidedly creepy uses of brain data, here.

Ross Compton’s heart data was used against him when he was accused of burning down his home in Ohio in 2016. Brain data could be used in a similar way. One person has already had to hand over recordings from a brain implant to law enforcement officials after being accused of assaulting a police officer. (It turned out that person was actually having a seizure at the time.) I looked at some of the other ways your brain data could be used against you in a previous edition of The Checkup.

Teeny-tiny versions of EEG caps have been used to measure electrical activity in brain organoids (clumps of neurons that are meant to represent a full brain), as my colleague Rhiannon Williams reported a couple of years ago.

EEG has also been used to create a “brain-to-brain network that allows three people to collaborate on a game of Tetris by thought alone.

Some neuroscientists are using EEG to search for signs of consciousness in people who seem completely unresponsive. One team found such signs in a 21-year-old woman who had experienced a traumatic brain injury. “Every clinical diagnostic test, experimental and established, showed no signs of consciousness,” her neurophysiologist told MIT Technology Review. After a test that involved EEG found signs of consciousness, the neurophysiologist told rehabilitation staff to “search everywhere and find her!” They did, about a month later. With physical and drug therapy, she learned to move her fingers to answer simple questions.

From around the web

Food waste is a problem. This Japanese company is fermenting it to create sustainable animal feed. In case you were wondering, the food processing plant smells like a smoothie, and the feed itself tastes like sour yogurt. (BBC Future)

The pharmaceutical company Gilead Sciences is accused of “patent hopping”—having dragged its feet to bring a safer HIV treatment to market while thousands of people took a harmful one. The company should be held accountable, argues a cofounder of PrEP4All, an advocacy organization promoting a national HIV prevention plan. (STAT)

Anti-suicide nets under San Francisco’s Golden Gate Bridge are already saving lives, perhaps by acting as a deterrent. (The San Francisco Standard)

Genetic screening of newborn babies could help identify treatable diseases early in life. Should every baby be screened as part of a national program? (Nature Medicine)

Is “race science”—which, it’s worth pointing out, is nothing but pseudoscience—on the rise, again? The far right’s references to race and IQ make it seem that way. (The Atlantic)

As part of our upcoming magazine issue celebrating 125 years of MIT Technology Review and looking ahead to the next 125, my colleague Antonio Regalado explores how the gene-editing tool CRISPR might influence the future of human evolution. (MIT Technology Review)

Beyond gene-edited babies: the possible paths for tinkering with human evolution

22 August 2024 at 12:00

In 2016, I attended a large meeting of journalists in Washington, DC. The keynote speaker was Jennifer Doudna, who just a few years before had co-invented CRISPR, a revolutionary method of changing genes that was sweeping across biology labs because it was so easy to use. With its discovery, Doudna explained, humanity had achieved the ability to change its own fundamental molecular nature. And that capability came with both possibility and danger. One of her biggest fears, she said, was “waking up one morning and reading about the first CRISPR baby”—a child with deliberately altered genes baked in from the start.  

As a journalist specializing in genetic engineering—the weirder the better—I had a different fear. A CRISPR baby would be a story of the century, and I worried some other journalist would get the scoop. Gene editing had become the biggest subject on the biotech beat, and once a team in China had altered the DNA of a monkey to introduce customized mutations, it seemed obvious that further envelope-pushing wasn’t far off. 

If anyone did create an edited baby, it would raise moral and ethical issues, among the profoundest of which, Doudna had told me, was that doing so would be “changing human evolution.” Any gene alterations made to an embryo that successfully developed into a baby would get passed on to any children of its own, via what’s known as the germline. What kind of scientist would be bold enough to try that? 

Two years and nearly 8,000 miles in an airplane seat later, I found the answer. At a hotel in Guangzhou, China, I joined a documentary film crew for a meeting with a biophysicist named He Jiankui, who appeared with a retinue of advisors. During the meeting, He was immensely gregarious and spoke excitedly about his research on embryos of mice, monkeys, and humans, and about his eventual plans to improve human health by adding beneficial genes to people’s bodies from birth. Still imagining that such a step must lie at least some way off, I asked if the technology was truly ready for such an undertaking. 

“Ready,” He said. Then, after a laden pause: “Almost ready.”

Why wait 100,000 years for natural selection to do its job? For a few hundred dollars in chemicals, you could try to install these changes in an embryo in 10 minutes.

Four weeks later, I learned that he’d already done it, when I found data that He had placed online describing the genetic profiles of two gene-edited human fetuses—that is, ”CRISPR babies” in gestation—as well an explanation of his plan, which was to create humans immune to HIV. He had targeted a gene called CCR5, which in some people has a variation known to protect against HIV infection. It’s rare for numbers in a spreadsheet to make the hair on your arms stand up, although maybe some climatologists feel the same way seeing the latest Arctic temperatures. It appeared that something historic—and frightening—had already happened. In our story breaking the news that same day, I ventured that the birth of genetically tailored humans would be something between a medical breakthrough and the start of a slippery slope of human enhancement. 

For his actions, He was later sentenced to three years in prison, and his scientific practices were roundly excoriated. The edits he made, on what proved to be twin girls (and a third baby, revealed later), had in fact been carelessly imposed, almost in an out-of-control fashion, according to his own data. And I was among a flock of critics—in the media and academia—who would subject He and his circle of advisors to Promethean-level torment via a daily stream of articles and exposés. Just this spring, Fyodor Urnov, a gene-editing specialist at the University of California, Berkeley, lashed out on X, calling He a scientific “pyromaniac” and comparing him to a Balrog, a demon from J.R.R. Tolkien’s The Lord of the Rings. It could seem as if He’s crime wasn’t just medical wrongdoing but daring to take the wheel of the very processes that brought you, me, and him into being. 

Futurists who write about the destiny of humankind have imagined all sorts of changes. We’ll all be given auxiliary chromosomes loaded with genetic goodies, or maybe we’ll march through life as a member of a pod of identical clones. Perhaps sex will become outdated as we reproduce exclusively through our stem cells. Or human colonists on another planet will be isolated so long that they become their own species. The thing about He’s idea, though, is that he drew it from scientific realities close at hand. Just as some gene mutations cause awful, rare diseases, others are being discovered that lend a few people the ability to resist common ones, like diabetes, heart disease, Alzheimer’s—and HIV. Such beneficial, superpower-like traits might spread to the rest of humanity, given enough time. But why wait 100,000 years for natural selection to do its job? For a few hundred dollars in chemicals, you could try to install these changes in an embryo in 10 minutes. That is, in theory, the easiest way to go about making such changes—it’s just one cell to start with. 

Editing human embryos is restricted in much of the world—and making an edited baby is flatly illegal in most countries surveyed by legal scholars. But advancing technology could render the embryo issue moot. New ways of adding CRISPR to the bodies of people already born—children and adults—could let them easily receive changes as well. Indeed, if you are curious what the human genome could look like in 125 years, it’s possible that many people will be the beneficiaries of multiple rare, but useful, gene mutations currently found in only small segments of the population. These could protect us against common diseases and infections, but eventually they could also yield frank improvements in other traits, such as height, metabolism, or even cognition. These changes would not be passed on genetically to people’s offspring, but if they were widely distributed, they too would become a form of human-directed self-evolution—easily as big a deal as the emergence of computer intelligence or the engineering of the physical world around us.

I was surprised to learn that even as He’s critics take issue with his methods, they see the basic stratagem as inevitable. When I asked Urnov, who helped coin the term “genome editing” in 2005, what the human genome could be like in, say, a century, he readily agreed that improvements using superpower genes will probably be widely introduced into adults—and embryos—as the technology to do so improves. But he warned that he doesn’t necessarily trust humanity to do things the right way. Some groups will probably obtain the health benefits before others. And commercial interests could eventually take the trend in unhelpful directions—much as algorithms keep his students’ noses pasted, unnaturally, to the screens of their mobile phones. “I would say my enthusiasm for what the human genome is going to be in 100 years is tempered by our history of a lack of moderation and wisdom,” he said. “You don’t need to be Aldous Huxley to start writing dystopias.”

Editing early

At around 10 p.m. Beijing time, He’s face flicked into view over the Tencent videoconferencing app. It was May 2024, nearly six years after I had first interviewed him, and he appeared in a loftlike space with a soaring ceiling and a wide-screen TV on a wall. Urnov had warned me not to speak with He, since it would be like asking “Bernie Madoff to opine about ethical investing.” But I wanted to speak to him, because he’s still one of the few scientists willing to promote the idea of broad improvements to humanity’s genes. 

Of course, it’s his fault everyone is so down on the idea. After his experiment, China formally made “implantation” of gene-edited human embryos into the uterus a crime. Funding sources evaporated. “He created this blowback, and it brought to a halt many people’s research. And there were not many to begin with,” says Paula Amato, a fertility doctor at Oregon Health and Science University who co-leads one of only two US teams that have ever reported editing human embryos in a lab.  “And the publicity—nobody wants to be associated with something that is considered scandalous or eugenic.”

After leaving prison in 2022, the Chinese biophysicist surprised nearly everyone by seeking to make a scientific comeback. At first, he floated ideas for DNA-based data storage and “affordable” cures for children who have muscular dystrophy. But then, in summer 2023, he posted to social media that he intended to return to research on how to change embryos with gene editing, with the caveat that “no human embryo will be implanted for pregnancy.” His new interest was a gene called APP, or amyloid precursor protein. It’s known that people who possess a very rare version, or “allele,” of this gene almost never develop Alzheimer’s disease

In our video call, He said the APP gene is the main focus of his research now and that he is determining how to change it. The work, he says, is not being conducted on human embryos, but rather on mice and on kidney cells, using an updated form of CRISPR called base editing, which can flip individual letters of DNA without breaking the molecule. 

“We just want to expand the protective allele from small amounts of lucky people to maybe most people,” He told me. And if you made the adjustment at the moment an egg is fertilized, you would only have to change one cell in order for the change to take hold in the embryo and, eventually, everywhere in a person’s brain. Trying to edit an individual’s brain after birth “is as hard a delivering a person to the moon,” He said. “But if you deliver gene editing to an embryo, it’s as easy as driving home.” 

In the future, He said, human embryos will “obviously” be corrected for all severe genetic diseases. But they will also receive “a panel” of “perhaps 20 or 30” edits to improve health. (If you’ve seen the sci-fi film Gattaca, it takes place in a world where such touch-ups are routine—leading to stigmatization of the movie’s hero, a would-be space pilot who lacks them.) One of these would be to install the APP variant, which involves changing a single letter of DNA. Others would protect against diabetes, and maybe cancer and heart disease. He calls these proposed edits “genetic vaccines” and believes people in the future “won’t have to worry” about many of the things most likely to kill them today.  

Is He the person who will bring about this future? Last year, in what seemed to be a step toward his rehabilitation, he got a job heading a gene center at Wuchang University of Technology, a third-tier institution in Wuhan. But He said during our call that he had already left the position. He didn’t say what had caused the split but mentioned that a flurry of press coverage had “made people feel pressured.” One item, in a French financial paper, Les Echos, was titled “GMO babies: The secrets of a Chinese Frankenstein.” Now he carries out research at his own private lab, he says, with funding from Chinese and American supporters. He has early plans for a startup company. Could he tell me names and locations? “Of course not,” he said with a chuckle. 

little girl holding a snake
MICHAEL BYERS

It could be there is no lab, just a concept. But it’s a concept that is hard to dismiss. Would you give your child a gene tweak—a swap of a single genetic letter among the 3 billion that run the length of the genome—to prevent Alzheimer’s, the mind thief that’s the seventh-leading cause of death in the US? Polls find that the American public is about evenly split on the ethics of adding disease resistance traits to embryos. A sizable minority, though, would go further. A 2023 survey published in Science found that nearly 30% of people would edit an embryo if it enhanced the resulting child’s chance of attending a top-ranked college. 

The benefits of the genetic variant He claims to be working with were discovered by the Icelandic gene-hunting company deCode Genetics. Twenty-six years ago, in 1998, its founder, a doctor named Kári Stefánsson, got the green light to obtain medical records and DNA from Iceland’s citizens, allowing deCode to amass one of the first large national gene databases. Several similar large biobanks now operate, including one in the United Kingdom, which recently finished sequencing the genomes of 500,000 volunteers. These biobanks make it possible to do computerized searches to find relationships between people’s genetic makeup and real-life differences like how long they live, what diseases they get, and even how much beer they drink. The result is a statistical index of how strongly every possible difference in human DNA affects every trait that can be measured. 

In 2012, deCode’s geneticists used the technique to study a tiny change in the APP gene and determined that the individuals who had it rarely developed Alzheimer’s. They otherwise seemed healthy. In fact, they seemed particularly sharp in old age and appeared to live longer, too. Lab tests confirmed that the change reduces the production of brain plaques, the abnormal clumps of protein that are a hallmark of the disease. 

“This is beginning to be about the essence of who we are as a species.”

Kári Stefánsson, founder and CEO, deCode genetics

One way evolution works is when a small change or error appears in one baby’s DNA. If the change helps that person survive and reproduce, it will tend to become more common in the species—eventually, over many generations, even universal. This process is slow, but it’s visible to science. In 2018, for example, researchers determined that the Bajau, a group indigenous to Indonesia whose members collect food by diving, possess genetic changes associated with bigger spleens. This allows them to store more oxygenated red blood cells—an advantage in their lives. 

Even though the variation in the APP gene seems hugely beneficial, it’s a change that benefits old people, way past their reproductive years. So it’s not the kind of advantage natural selection can readily act on. But we could act on it. That is what technology-assisted evolution would look like—seizing on a variation we think is useful and spreading it. “The way, probably, that enhancement will be done will be to look at the population, look at people who have enhanced capabilities—whatever those might be,” the Israeli medical geneticist Ephrat Levy-Lahad said during a gene-editing summit last year. “You are going to be using variations that already exist in the population that you already have information on.”

One advantage of zeroing in on advantageous DNA changes that already exist in the population is that their effects are pretested. The people located by deCode were in their 80s and 90s. There didn’t seem to be anything different about them—except their unusually clear minds. Their lives—as seen from the computer screens of deCode’s biobank—served as a kind of long-term natural experiment. Yet scientists could not be fully confident placing this variant into an embryo, since the benefits or downsides might differ depending on what other genetic factors are already present, especially other Alzheimer’s risk genes. And it would be difficult to run a study to see what happens. In the case of APP, it would take 70 years for the final evidence to emerge. By that time, the scientists involved would all be dead. 

When I spoke with Stefánsson last year, he made the case both for and against altering genomes with “rare variants of large effect,” like the change in APP. “All of us would like to keep our marbles until we die. There is no question about it. And if you could, by pushing a button, install the kind of protection people with this mutation have, that would be desirable,” he said. But even if the technology to make this edit before birth exists, he says, the risks of doing so seem almost impossible to gauge: “You are not just affecting the person, but all their descendants forever. These are mutations that would allow for further selection and further evolution, so this is beginning to be about the essence of who we are as a species.”

Editing everyone

Some genetic engineers believe that editing embryos, though in theory easy to do, will always be held back by these grave uncertainties. Instead, they say, DNA editing in living adults could become easy enough to be used not only to correct rare diseases but to add enhanced capabilities to those who seek them. If that happens, editing for improvement could spread just as quickly as any consumer technology or medical fad. “I don’t think it’s going to be germline,” says George Church, a Harvard geneticist often sought out for his prognostications. “The 8 billion of us who are alive kind of constitute the marketplace.” For several years, Church has been circulating what he calls “my famous, or infamous, table of enhancements.” It’s a tally of gene variants that lend people superpowers, including APP and another that leads to extra-hard bones, which was found in a family that complained of not being able to stay afloat in swimming pools. The table is infamous because some believe Church’s inclusion of the HIV-protective CCR5 variant inspired He’s effort to edit it into the CRISPR babies.

Church believes novel gene treatments for very serious diseases, once proven, will start leading the way toward enhancements and improvements to people already born. “You’d constantly be tweaking and getting feedback,” he says—something that’s hard to do with the germline, since humans take so long to grow up. Changes to adult bodies would not be passed down, but Church thinks they could easily count as a form of heredity. He notes that railroads, eyeglasses, cell phones—and the knowledge of how to make and use all these technologies—are already all transmitted between generations. “We’re clearly inheriting even things that are inorganic,” he says. 

The biotechnology industry is already finding ways to emulate the effects of rare, beneficial variants. A new category of heart drugs, for instance, mimics the effect of a rare variation in a gene, called PCSK9, that helps maintain cholesterol levels. The variation, initially discovered in a few people in the US and Zimbabwe, blocks the gene’s activity and gives them ultra-low cholesterol levels for life. The drugs, taken every few weeks or months, work by blocking the PCSK9 protein. One biotech company, though, has started trying to edit the DNA of people’s liver cells (the site of cholesterol metabolism) to introduce the same effect permanently. 

For now, gene editing of adult bodies is still challenging and is held back by the difficulty of “delivering” the CRISPR instructions to thousands, or even billions of cells—often using viruses to carry the payloads. Organs like the brain and muscles are hard to access, and the treatments can be ordeals. Fatalities in studies aren’t unheard-of. But biotech companies are pouring dollars into new, sleeker ways to deliver CRISPR to hard-to-reach places. Some are designing special viruses that can home in on specific types of cells. Others are adopting nanoparticles similar to those used in the covid-19 vaccines, with the idea of introducing editors easily, and cheaply, via a shot in the arm. 

At the Innovative Genomics Institute, a center established by Doudna in Berkeley, California, researchers anticipate that as delivery improves, they will be able to create a kind of CRISPR conveyor belt that, with a few clicks of a mouse, allows doctors to design gene-editing treatments for any serious inherited condition that afflicts children, including immune deficiencies so uncommon that no company will take them on. “This is the trend in my field. We can capitalize on human genetics quite quickly, and the scope of the editable human will rapidly expand,” says Urnov, who works at the institute. “We know that already, today—and forget 2124, this is in 2024—we can build enough CRISPR for the entire planet. I really, really think that [this idea of] gene editing in a syringe will grow. And as it does, we’re going to start to face very clearly the question of how we equitably distribute these resources.” 

For now, gene-editing interventions are so complex and costly that only people in wealthy countries are receiving them. The first such therapy to get FDA approval, a treatment for sickle-cell disease, is priced at over $2 million and requires a lengthy hospital stay. Because it’s so difficult to administer, it’s not yet being offered in most of Africa, even though that is where sickle-cell disease is most common. Such disparities are now propelling efforts to greatly simplify gene editing, including a project jointly paid for by the Gates Foundation and the National Institutes of Health that aims to design “shot in the arm” CRISPR, potentially making cures scalable and “accessible to all.” A gene editor built along the lines of the covid-19 vaccine might cost only $1,000. The Gates Foundation sees the technology as a way to widely cure both sickle-cell and HIV—an “unmet need” in Africa, it says. To do that, the foundation is considering introducing into people’s bone marrow the exact HIV-defeating genetic change that He tried to install in embryos. 

Then there’s the risk that gene terrorists, or governments, could change people’s DNA without their permission or knowledge.

Scientists can foresee great benefits ahead—even a “final frontier of molecular liberty,” as Christopher Mason, a “space geneticist” at Weill Cornell Medicine in New York, characterizes it. Mason works with newer types of gene editors that can turn genes on or off temporarily. He is using these in his lab to make cells resistant to radiation damage. The technology could be helpful to astronauts or, he says, for a weekend of “recreational genomics”—say, boosting your repair genes in preparation to visit the site of the Chernobyl power plant. The technique is “getting to be, I actually think it is, a euphoric application of genetic technologies,” says Mason. “We can say, hey, find a spot on the genome and flip a light switch on or off on any given gene to control its expression at a whim.”  

Easy delivery of gene editors to adult bodies could give rise to policy questions just as urgent as the ones raised by the CRISPR babies. Whether we encourage genetic enhancement—in particular, free-market genome upgrades—is one of them. Several online health influencers have already been touting an unsanctioned gene therapy, offered in Honduras, that its creators claim increases muscle mass. Another risk: If changing people’s DNA gets easy enough, gene terrorists or governments could do it without their permission or knowledge. One genetic treatment for a skin disease, approved in the US last year, is formulated as a cream—the first rub-on gene therapy (though not a gene editor). 

Some scientists believe new delivery tools should be kept purposefully complex and cumbersome, so that only experts can use them—a biological version of “security through obscurity.” But that’s not likely to happen. “Building a gene editor to make these changes is no longer, you know, the kind of technology that’s in the realm of 100 people who can do it. This is out there,” says Urnov. “And as delivery improves, I don’t know how we will be able to regulate that.”

man sitting and reading with man behind him
MICHAEL BYERS

In our conversation, Urnov frequently returned to that list of superpowers—genetic variants that make some people outliers in one way or another. There is a mutation that allows people to get by on five hours of sleep a night, with no ill effects. There is a woman in Scotland whose genetic peculiarity means she feels no pain and is perpetually happy, though also forgetful. Then there is Eero Mäntyranta, the cross-country ski champion who won three medals at the 1964 Winter Olympics and who turned out to have an inordinate number of red blood cells thanks to an alteration in a gene called the EPO receptor. It’s basically a blueprint for anyone seeking to join the Enhanced Games, the libertarian plan for a pro-doping international sports competition that critics call “borderline criminal” but which has the backing of billionaire Peter Thiel, among others. 

All these are possibilities for the future of the human genome, and we won’t even necessarily need to change embryos to get there. Some researchers even expect that with some yet-to-be-conceived technology, updating a person’s DNA could become as simple as sending a document via Wi-Fi, with today’s viruses or nanoparticles becoming anachronisms like floppy disks. I asked Church for his prediction about where gene-editing technology is going in the long term. “Eventually you’d get shot up with a whole bunch of things when you’re born, or it could even be introduced during pregnancy,” he said. “You’d have all the advantages without the disadvantages of being stuck with heritable changes.” 

And that will be evolution too.

How we could turn plastic waste into food

21 August 2024 at 19:28

In 2019, an agency within the U.S. Department of Defense released a call for research projects to help the military deal with the copious amount of plastic waste generated when troops are sent to work in remote locations or disaster zones. The agency wanted a system that could convert food wrappers and water bottles, among other things, into usable products, such as fuel and rations. The system needed to be small enough to fit in a Humvee and capable of running on little energy. It also needed to harness the power of plastic-eating microbes.

“When we started this project four years ago, the ideas were there. And in theory, it made sense,” said Stephen Techtmann, a microbiologist at Michigan Technological University, who leads one of the three research groups receiving funding. Nevertheless, he said, in the beginning, the effort “felt a lot more science-fiction than really something that would work.”

In one reactor, shown here at a recent MTU demonstration, some deconstructed plastics are subject to high heat and the absence of oxygen — a process called pyrolysis.
KADEN STALEY/MICHIGAN TECHNOLOGICAL UNIVERSITY

That uncertainty was key. The Defense Advanced Research Projects Agency, or DARPA, supports high-risk, high-reward projects. This means there’s a good chance that any individual effort will end in failure. But when a project does succeed, it has the potential to be a true scientific breakthrough. “Our goal is to go from disbelief, like, ‘You’re kidding me. You want to do what?’ to ‘You know, that might be actually feasible,’” said Leonard Tender, a program manager at DARPA who is overseeing the plastic waste projects.

The problems with plastic production and disposal are well known. According to the United Nations Environment Program, the world creates about 440 million tons of plastic waste per year. Much of it ends up in landfills or in the ocean, where microplastics, plastic pellets, and plastic bags pose a threat to wildlife. Many governments and experts agree that solving the problem will require reducing production, and some countries and U.S. states have additionally introduced policies to encourage recycling.

For years, scientists have also been experimenting with various species of plastic-eating bacteria. But DARPA is taking a slightly different approach in seeking a compact and mobile solution that uses plastic to create something else entirely: food for humans.

In the beginning, the effort “felt a lot more science-fiction than really something that would work.”

The goal, Techtmann hastens to add, is not to feed people plastic. Rather, the hope is that the plastic-devouring microbes in his system will themselves prove fit for human consumption. While Techtmann believes most of the project will be ready in a year or two, it’s this food step that could take longer. His team is currently doing toxicity testing, and then they will submit their results to the Food and Drug Administration for review. Even if all that goes smoothly, an additional challenge awaits. There’s an ick factor, said Techtmann, “that I think would have to be overcome.”

The military isn’t the only entity working to turn microbes into nutrition. From Korea to Finland, a small number of researchers, as well as some companies, are exploring whether microorganisms might one day help feed the world’s growing population.


According to Tender, DARPA’s call for proposals was aimed at solving two problems at once. First, the agency hoped to reduce what he called supply-chain vulnerability: During war, the military needs to transport supplies to troops in remote locations, which creates a safety risk for people in the vehicle. Additionally, the agency wanted to stop using hazardous burn pits as a means of dealing with plastic waste. “Getting those waste products off of those sites responsibly is a huge lift,” Tender said.

A research engineer working on the MTU project takes a raw sample from the pyrolysis reactor, which can be upcycled into fuels and lubricants.
KADEN STALEY/MICHIGAN TECHNOLOGICAL UNIVERSITY

The Michigan Tech system begins with a mechanical shredder, which reduces the plastic to small shards that then move into a reactor, where they soak in ammonium hydroxide under high heat. Some plastics, such as PET, which is commonly used to make disposable water bottles, break down at this point. Other plastics used in military food packaging — namely polyethylene and polypropylene — are passed along to another reactor, where they are subject to much higher heat and an absence of oxygen.

Under these conditions, the polyethylene and polypropylene are converted into compounds that can be upcycled into fuels and lubricants. David Shonnard, a chemical engineer at Michigan Tech who oversaw this component of the project, has developed a startup company called Resurgent Innovation to commercialize some of the technology. (Other members of the research team, said Shonnard, are pursuing additional patents related to other parts of the system.)

After the PET has broken down in the ammonium hydroxide, the liquid is moved to another reactor, where it is consumed by a colony of microbes. Techtmann initially thought he would need to go to a highly contaminated environment to find bacteria capable of breaking down the deconstructed plastic. But as it turned out, bacteria from compost piles worked really well. This may be because the deconstructed plastic that enters the reactor has a similar molecular structure to some plant material compounds, he said. So the bacteria that would otherwise eat plants can perhaps instead draw their energy from the plastic.

Materials for the MTU project are shown at a recent demonstration. Before being placed in a reactor, plastic feedstocks (bottom row) are mechanically shredded into small pieces.
KADEN STALEY/MICHIGAN TECHNOLOGICAL UNIVERSITY

After the bacteria consume the plastic, the microbes are then dried into a powder that smells a bit like nutritional yeast and has a balance of fats, carbohydrates, and proteins, said Techtmann.

Research into edible microorganisms dates back at least 60 years, but the body of evidence is decidedly small. (One review estimated that since 1961, an average of seven papers have been published per year.) Still, researchers in the field say there are good reasons for countries to consider microbes as a food source. Among other things, they are rich in protein, wrote Sang Yup Lee, a bioengineer and senior vice president for research at Korea Advanced Institute of Science and Technology, in an email to Undark. Lee and others have noted that growing microbes requires less land and water than conventional agriculture. Therefore, they might prove to be a more sustainable source of nutrition, particularly as the human population grows.

The product from the microbe reactor is collected in a glass jar. The microbes can be dried into a powder for human consumption — once they are deemed safe by regulators.
After PET is broken down in the ammonium hydroxide, the liquid is moved to a reactor where it is consumed by a colony of microbes.

Lee reviewed a paper describing the microbial portion of the Michigan Tech project, and said that the group’s plans are feasible. But he pointed out a significant challenge: At the moment, only certain microorganisms are considered safe to eat, namely “those we have been eating thorough fermented food and beverages, such as lactic acid bacteria, bacillus, some yeasts.” But these don’t degrade plastics.


Before using the plastic-eating microbes as food for humans, the research team will submit evidence to regulators indicating that the substance is safe. Joshua Pearce, an electrical engineer at Western University in Ontario, Canada, performed the initial toxicology screening, breaking the microbes down into smaller pieces, which they compared against known toxins.

“We’re pretty sure there’s nothing bad in there,” said Pearce. He added that the microbes have also been fed to C. elegans roundworms without apparent ill-effects, and the team is currently looking at how rats do when they consume the microbes over the longer term. If the rats do well, then the next step would be to submit data to the Food and Drug Administration for review.

Before using the plastic-eating microbes as food for humans, the research team will submit evidence to regulators indicating that the substance is safe.

At least a handful of companies are in various stages of commercializing new varieties of edible microbes. A Finnish startup, Solar Foods, for example, has taken a bacterium found in nature and created a powdery product with a mustard brown hue that has been approved for use in Singapore. In an email to Undark, chief experience officer Laura Sinisalo said that the company has applied for approval in the E.U. and the U.K., as well as in the U.S., where it hopes to enter the market by the end of this year.

Even if the plastic-eating microbes turn out to be safe for human consumption, Techtmann said, the public might still balk at the prospect of eating something nourished on plastic waste. For this reason, he said, this particular group of microbes might prove most useful on remote military bases or during disaster relief, where it could be consumed short-term, to help people survive.

“I think there’s a bit less of a concern about the ick factor,” said Techtmann, “if it’s really just, ‘This is going to keep me alive for another day or two.’”

This article was originally published on Undark. Read the original article.

This researcher wants to replace your brain, little by little

16 August 2024 at 10:20

A US agency pursuing moonshot health breakthroughs has hired a researcher advocating an extremely radical plan for defeating death.

His idea? Replace your body parts. All of them. Even your brain. 

Jean Hébert, a new hire with the US Advanced Projects Agency for Health (ARPA-H), is expected to lead a major new initiative around “functional brain tissue replacement,” the idea of adding youthful tissue to people’s brains. 

President Joe Biden created ARPA-H in 2022, as an agency within the Department of Health and Human Services, to pursue what he called  “bold, urgent innovation” with transformative potential. 

The brain renewal concept could have applications such as treating stroke victims, who lose areas of brain function. But Hébert, a biologist at the Albert Einstein school of medicine, has most often proposed total brain replacement, along with replacing other parts of our anatomy, as the only plausible means of avoiding death from old age.

As he described in his 2020 book, Replacing Aging, Hébert thinks that to live indefinitely people must find a way to substitute all their body parts with young ones, much like a high-mileage car is kept going with new struts and spark plugs.

The idea has a halo of plausibility since there are already liver transplants and titanium hips, artificial corneas and substitute heart valves. The trickiest part is your brain. That ages, too, shrinking dramatically in old age. But you don’t want to swap it out for another—because it is you.

And that’s where Hébert’s research comes in. He’s been exploring ways to “progressively” replace a brain by adding bits of youthful tissue made in a lab. The process would have to be done slowly enough, in steps, that your brain could adapt, relocating memories and your self-identity.  

During a visit this spring to his lab at Albert Einstein, Hébert showed MIT Technology Review how he has been carrying out initial experiments with mice, removing small sections of their brains and injecting slurries of embryonic cells. It’s a step toward proving whether such youthful tissue can survive and take over important functions.

To be sure, the strategy is not widely accepted, even among researchers in the aging field. “On the surface it sounds completely insane, but I was surprised how good a case he could make for it,” says Matthew Scholz, CEO of aging research company Oisín Biotechnologies, who met with Hébert this year. 

Scholz is still skeptical though. “A new brain is not going to be a popular item,” he says. “The surgical element of it is going to be very severe, no matter how you slice it.”

Now, though, Hébert’s ideas appear to have gotten a huge endorsement from the US government. Hébert told MIT Technology Review that he had proposed a $110 million project to ARPA-H to prove his ideas in monkeys and other animals, and that the government “didn’t blink” at the figure. 

ARPA-H confirmed this week that it had hired Hébert as a program manager. 

The agency, modeled on DARPA, the Department of Defense organization that developed stealth fighters, gives managers unprecedented leeway in awarding contracts to develop novel technologies. Among its first programs are efforts to develop at-home cancer tests and cure blindness with eye transplants.

President Biden created ARPA-H in 2022 to pursue “bold, urgent innovation” with transformative potential.

It may be several months before details of the new project are announced, and it’s possible that ARPA-H will establish more conventional goals like treating stroke victims and Alzheimer’s patients, whose brains are damaged, rather than the more radical idea of extreme life extension. 

If it can work, forget aging; it would be useful for all kinds of neurodegenerative disease,” says Justin Rebo, a longevity scientist and entrepreneur.

But defeating death is Hébert’s stated aim. “I was a weird kid and when I found out that we all fall apart and die, I was like, ‘Why is everybody okay with this?’ And that has pretty much guided everything I do,” he says. “I just prefer life over this slow degradation into nonexistence that biology has planned for all of us.”

Hébert, now 58, also recalls when he began thinking that the human form might not be set in stone. It was upon seeing the 1973 movie Westworld, in which the gun-slinging villain, played by Yul Brynner, turns out to be an android. “That really stuck with me,” Hébert said.

Lately, Hébert has become something of a star figure among immortalists, a fringe community devoted to never dying. That’s because he’s an established scientist who is willing to propose extreme steps to avoid death. “A lot of people want radical life extension without a radical approach. People want to take a pill, and that’s not going to happen,” says Kai Micah Mills, who runs a company, Cryopets, developing ways to deep-freeze cats and dogs for future reanimation.

The reason pharmaceuticals won’t ever stop aging, Hébert says, is that time affects all of our organs and cells and even degrades substances such as elastin, one of the molecular glues that holds our bodies together. So even if, say, gene therapy could rejuvenate the DNA inside cells, a concept some companies are exploring, Hébert believes we’re still doomed as the scaffolding around them comes undone.

One organization promoting Hébert’s ideas is the Longevity Biotech Fellowship (LBF), a self-described group of “hardcore” life extension enthusiasts, which this year published a technical roadmap for defeating aging altogether. In it, they used data from Hébert’s ARPA-H proposal to argue in favor of extending life with gradual brain replacement for elderly subjects, as well as transplant of their heads onto the bodies of “non-sentient” human clones, raised to lack a functioning brain of their own, a procedure they referred to as “body transplant.”

Such a startling feat would involve several technologies that don’t yet exist, including a means to attach a transplanted head to a spinal cord. Even so, the group rates “replacement” as the most likely way to conquer death, claiming it would take only 10 years and $3.6 billion to demonstrate.

“It doesn’t require you to understand aging,” says Mark Hamalainen, co-founder of the research and education group. “That is why Jean’s work is interesting.”

Hébert’s connections to such far-out concepts (he serves as a mentor in LBF’s training sessions) could make him an edgy choice for ARPA-H, a young agency whose budget is $1.5 billion a year.

For instance, Hebert recently said on a podcast with Hamalainen that human fetuses might be used as a potential source of life-extending parts for elderly people. That would be ethical to do, Hébert said during the program, if the fetus is young enough that there “are no neurons, no sentience, and no person.” And according to a meeting agenda viewed by MIT Technology Review, Hébert was also a featured speaker at an online pitch session held last year on full “body replacement,” which included biohackers and an expert in primate cloning.

Hébert declined to describe the session, which he said was not recorded “out of respect for those who preferred discretion.” But he’s in favor of growing non-sentient human bodies. “I am in conversation with all these groups because, you know, not only is my brain slowly deteriorating, but so is the rest of my body,” says Hébert. “I’m going to need other body parts as well.”

The focus of Hébert’s own scientific work is the neocortex, the outer part of the brain that looks like a pile of extra-thick noodles and which houses most of our senses, reasoning, and memory. The neocortex is “arguably the most important part of who we are as individuals,” says Hébert, as well as “maybe the most complex structure in the world.”

There are two reasons he believes the neocortex could be replaced, albeit only slowly. The first is evidence from rare cases of benign brain tumors, like a man described in the medical literature who developed a growth the size of an orange. Yet because it grew very slowly, the man’s brain was able to adjust, shifting memories elsewhere, and his behavior and speech never seemed to change—even when the tumor was removed. 

That’s proof, Hébert thinks, that replacing the neocortex little by little could be achieved “without losing the information encoded in it” such as a person’s self-identity.

The second source of hope, he says, is experiments showing that fetal-stage cells can survive, and even function, when transplanted into the brains of adults. For instance, medical tests underway are showing that young neurons can integrate into the brains of people who have epilepsy  and stop their seizures.  

“It was these two things together—the plastic nature of brains and the ability to add new tissue—that, to me, were like, ‘Ah, now there has got to be a way,’” says Hébert.

“I just prefer life over this slow degradation into nonexistence that biology has planned for all of us.”

One challenge ahead is how to manufacture the replacement brain bits, or what Hebert has called “facsimiles” of neocortical tissue. During a visit to his lab at Albert Einstein, Hébert described plans to manually assemble chunks of youthful brain tissue using stem cells. These parts, he says, would not be fully developed, but instead be similar to what’s found in a still-developing fetal brain. That way, upon transplant, they’d be able to finish maturing, integrate into your brain, and be “ready to absorb and learn your information.”

To design the youthful bits of neocortex, Hébert has been studying brains of aborted human fetuses 5 to 8 weeks of age. He’s been measuring what cells are present, and in what numbers and locations, to try to guide the manufacture of similar structures in the lab.

“What we’re engineering is a fetal-like neocortical tissue that has all the cell types and structure needed to develop into normal tissue on its own,” says Hébert. 

Part of the work has been carried out by a startup company, BE Therapeutics (it stands for Brain Engineering), located in a suite on Einstein’s campus and which is funded by Apollo Health Ventures, VitaDAO, and with contributions from a New York State development fund. The company had only two employees when MIT Technology Review visited this spring, and the its future is uncertain, says Hébert, now that he’s joining ARPA-H and closing his lab at Einstein.

Because it’s often challenging to manufacture even a single cell type from stem cells, making a facsimile of the neocortex involving a dozen cell types isn’t an easy project. In fact, it’s just one of several scientific problems standing between you and a younger brain, some of which might never have practical solutions. “There is a saying in engineering. You are allowed one miracle, but if you need more than one, find another plan,” says Scholz.

Maybe the crucial unknown is whether young bits of neocortex will ever correctly function inside an elderly person’s brain, for example by establishing connections or storing and sending electro-chemical information. Despite evidence the brain can incorporate individual transplanted cells, that’s never been robustly proven for larger bits of tissue, says Rusty Gage, a biologist at the Salk Institute in La Jolla, Calif., and who is considered a pioneer of neural transplants. He says researchers for years have tried to transplant larger parts of fetal animal brains into adult animals, but with inconclusive results. “If it worked, we’d all be doing more of it,” he says.

The problem, says Gage, isn’t whether the tissue can survive, but whether it can participate in the workings of an existing brain. “I am not dissing his hypothesis. But that’s all it is,” says Gage. “Yes, fetal or embryonic tissue can mature in the adult brain. But whether it replaces the function of the dysfunctional area is an experiment he needs to do, if he wants to convince the world he has actually replaced an aged section with a new section.”

In his new role at ARPA-H, it’s expected that Hébert will have a large budget to fund scientists to try and prove his ideas can work. He agrees it won’t be easy. “We’re, you know, a couple steps away from reversing brain aging,” says Hébert. “A couple of big steps away, I should say.”

Aging hits us in our 40s and 60s. But well-being doesn’t have to fall off a cliff.

15 August 2024 at 20:06

This article first appeared in The Checkup, MIT Technology Review’s weekly biotech newsletter. To receive it in your inbox every Thursday, and read articles like this first, sign up here.

This week I came across research that suggests aging hits us in waves. You might feel like you’re on a slow, gradual decline, but, at the molecular level, you’re likely to be hit by two waves of changes, according to the scientists behind the work. The first one comes in your 40s. Eek.

For the study, Michael Snyder at Stanford University and his colleagues collected a vast amount of biological data from 108 volunteers aged 25 to 75, all of whom were living in California. Their approach was to gather as much information as they could and look for age-related patterns afterward.

This approach can lead to some startling revelations, including the one about the impacts of age on 40-year-olds (who, I was horrified to learn this week, are generally considered “middle-aged”). It can help us answer some big questions about aging, and even potentially help us find drugs to counter some of the most unpleasant aspects of the process.

But it’s not as simple as it sounds. And midlife needn’t involve falling off a cliff in terms of your well-being. Let’s explore why.

First, the study, which was published in the journal Nature Aging on August 14. Snyder and his colleagues collected a real trove of data on their volunteers, including on gene expression, proteins, metabolites, and various other chemical markers. The team also swabbed volunteers’ skin, stool, mouths, and noses to get an idea of the microbial communities that might be living there.

Each volunteer gave up these samples every few months for a median period of 1.7 years, and the team ended up with a total of 5,405 samples, which included over 135,000 biological features. “The idea is to get a very complete picture of people’s health,” says Snyder.

When he and his colleagues analyzed the data, they found that around 7% of the molecules and microbes measured changes gradually over time, in a linear way. On the other hand, 81% of them changed at specific life stages. There seem to be two that are particularly important: one at around the age of 44, and another around the age of 60.

Some of the dramatic changes at age 60 seem to be linked to kidney and heart function, and diseases like atherosclerosis, which narrows the arteries. That makes sense, given that our risks of developing cardiovascular diseases increase dramatically as we age—around 40% of 40- to 59-year-olds have such disorders, and this figure rises to 75% for 60- to 79-year-olds.

But the changes that occur around the age of 40 came as a surprise to Snyder. He says that, on reflection, they make intuitive sense. Many of us start to feel a bit creakier once we hit 40, and it can take longer to recover from injuries, for example.

Other changes suggest that our ability to metabolize lipids and alcohol shifts when we reach our 40s, though it’s hard to say why, for a few reasons. 

First, it’s not clear if a change in alcohol metabolism, for example, means that we are less able to break down alcohol, or if people are just consuming less of it when they’re older.

This gets us to a central question about aging: Is it an inbuilt program that sets us on a course of deterioration, or is it merely a consequence of living?

We don’t have an answer to that one, yet. It’s probably a combination of both. Our bodies are exposed to various environmental stressors over time. But also, as our cells age, they are less able to divide, and clear out the molecular garbage they accumulate over time.

It’s also hard to tell what’s happening in this study, because the research team didn’t measure more physiological markers of aging, such as muscle strength or frailty, says Colin Selman, a biogerontologist at the University of Glasgow in Scotland.

There’s another, perhaps less scientific, question that comes to mind. How worried should we be about these kinds of molecular changes? I’m approaching 40—should I panic? I asked Sara Hägg, who studies the molecular epidemiology of aging at the Karolinska Institute in Stockholm, Sweden. “No,” was her immediate answer.

While Snyder’s team collected a vast amount of data, it was from a relatively small number of people over a relatively short period of time. None of them were tracked for the two or three decades you’d need to see the two waves of molecular changes occur in a person.

“This is an observational study, and they compare different people,” Hägg told me. “There is absolutely no evidence that this is going to happen to you.” After all, there’s a lot that can happen in a person’s life over 20 or 30 years. They might take up a sport. They might quit smoking or stop eating meat.  

However, the findings do support the idea that aging is not a linear process.

“People have always suggested that you’re on this decline in your life from [around the age of] 40, depressingly,” says Selman. “But it’s not quite as simple as that.”

Snyder hopes that studies like his will help reveal potential new targets for therapies that help counteract some of the harmful molecular shifts associated with aging. “People’s healthspan is 11 to 15 years shorter than their lifespan,” he says. “Ideally you’d want to live for as long as possible [in good health], and then die.”

We don’t have any such drugs yet. For now, it all comes down to the age-old advice about eating well, sleeping well, getting enough exercise, and avoiding the big no-nos like smoking and alcohol.

I happened to speak to Selman at the end of what had been a particularly difficult day, and I confessed that I was looking forward to enjoying an evening glass of wine. That’s despite the fact that research suggests that there is “no safe level” of alcohol consumption.

“A little bit of alcohol is actually quite nice,” Selman agreed. He told me about an experience he’d had once at a conference on aging. Some of the attendees were members of a society that practiced caloric restriction—the idea being that cutting your calories can boost your lifespan (we don’t yet know if this works for people). “There was a big banquet… and these people all had little scales, and were weighing their salads on the scales,” he told me. “To me, that seems like a rather miserable way to live your life.”

I’m all for finding balance between healthy lifestyle choices and those that bring me joy. And it’s worth remembering that no amount of deprivation is going to radically extend our lifespans. As Selman puts it: “We can do certain things, but ultimately, when your time’s up, your time’s up.”


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We don’t yet have a drug that targets aging. But that hasn’t stopped a bunch of longevity clinics from cropping up, offering a range of purported healthspan-extending services for the mega-rich. Now, they’re on a quest to legitimize longevity medicine.

Speaking of the uber wealthy, I also tagged along to an event for longevity enthusiasts ready to pump millions of dollars into the search for an anti-aging therapy. It was a fascinating, albeit slightly strange, experience.

There are plenty of potential rejuvenation strategies being explored right now. But the one that has received some of the most attention—and the most investment—is cellular reprogramming. My colleague Antonio Regalado looked at the promise of the field in this feature.

Scientists are working on new ways to measure how old a person is. Not just the number of birthdays they’ve had, but how aged or close to death they are. I took one of these biological aging tests. And I wasn’t all that pleased with the result.

Is there a limit to human life? Is old age a disease? Find out in the Mortality issue of MIT Technology Review’s magazine. 

You can of course read all of these stories and many more on our new app, which can be downloaded here (for Android users) or here (for Apple users).

From around the web

Mpox, the disease that has been surging in the Democratic Republic of the Congo and nearby countries, now constitutes a public health emergency of international concern, according to the World Health Organization. 

“The detection and rapid spread of a new clade [subgroup] of mpox in Eastern DRC, its detection in neighboring countries that had not previously reported mpox, and the potential for further spread within Africa and beyond is very worrying,” WHO director general Tedros Adhanom Ghebreyesus said in a briefing shared on X. “It’s clear that a coordinated international response is essential to stop these outbreaks and save lives.” (WHO)

Prosthetic limbs are often branded with company logos. For users of the technology, it can feel like a tattoo you didn’t ask for. (The Atlantic)

A testing facility in India submitted fraudulent data for more than 400 drugs to the FDA. But these drugs have not been withdrawn from the US market. That needs to be remedied, says the founder and president of a nonprofit focused on researching drug side effects. (STAT)

Antibiotics can impact our gut microbiomes. But the antibiotics given to people who undergo c-sections don’t have much of an impact on the baby’s microbiome. The way the baby is fed seems to be much more influential. (Cell Host & Microbe)

When unexpected infectious diseases show up in people, it’s not just physicians that are crucial. Veterinarian “disease detectives” can play a vital role in tracking how infections pass from animals to people, and the other way around. (New Yorker)

Watch a video showing what happens in our brains when we think

This article first appeared in The Checkup, MIT Technology Review’s weekly biotech newsletter. To receive it in your inbox every Thursday, and read articles like this first, sign up here.

What does a thought look like? We can think about thoughts resulting from shared signals between some of the billions of neurons in our brains. Various chemicals are involved, but it really comes down to electrical activity. We can measure that activity and watch it back.

Earlier this week, I caught up with Ben Rapoport, the cofounder and chief science officer of Precision Neuroscience, a company doing just that. It is developing brain-computer interfaces that Rapoport hopes will one day help paralyzed people control computers and, as he puts it, “have a desk job.”

Rapoport and his colleagues have developed thin, flexible electrode arrays that can be slipped under the skull through a tiny incision. Once inside, they can sit on a person’s brain, collecting signals from neurons buzzing away beneath. So far, 17 people have had these electrodes placed onto their brains. And Rapoport has been able to capture how their brains form thoughts. He even has videos. (Keep reading to see one for yourself, below.)

Brain electrodes have been around for a while and are often used to treat disorders such as Parkinson’s disease and some severe cases of epilepsy. Those devices tend to involve sticking electrodes deep inside the brain to access regions involved in those disorders.

Brain-machine interfaces are newer. In the last couple of decades, neuroscientists and engineers have made significant progress in developing technologies that allow them to listen in on brain activity and use brain data to allow people to control computers and prosthetic limbs by thought alone.

The technology isn’t commonplace yet, and early versions could only be used in a lab setting. Scientists like Rapoport are working on new devices that are more effective, less invasive, and more practical. He and his colleagues have developed a miniature device that fits 1,024 tiny electrodes onto a sliver of ribbon-like film that’s just 20 microns thick—around a third of the width of a human eyelash.

The vast majority of these electrodes are designed to pick up brain activity. The device itself is designed to be powered by a rechargeable battery implanted under the skin in the chest, like a pacemaker. And from there, data could be transmitted wirelessly to a computer outside the body.

Unlike other needle-like electrodes that penetrate brain tissue, Rapoport says his electrode array “doesn’t damage the brain at all.” Instead of being inserted into brain tissue, the electrode arrays are arranged on a thin, flexible film, fed through a slit in the skull, and placed on the surface of the brain.

From there, they can record what the brain is doing when the person thinks. In one case, Rapoport’s team inserted their electrode array into the skull of a man who was undergoing brain surgery to treat a disease. He was kept awake during his operation so that surgeons could make sure they weren’t damaging any vital regions of his brain. And all the while, the electrodes were picking up the electrical signals from his neurons.

This is what the activity looked like:

“This is basically the brain thinking,” says Rapoport. “You’re seeing the physical manifestation of thought.”

In this video, which I’ve converted to a GIF, you can see the pattern of electrical activity in the man’s brain as he recites numbers. Each dot represents the voltage sensed by an electrode on the array on the man’s brain, over a region involved in speech. The reds and oranges represent higher voltages, while the blues and purples represent lower ones. The video has been slowed down 20-fold, because “thoughts happen faster than the eye can see,” says Rapoport.

This approach allows neuroscientists to visualize what happens in the brain when we speak—and when we plan to speak. “We can decode his intention to say a word even before he says it,” says Rapoport. That’s important—scientists hope technologies will interpret these kinds of planning signals to help some individuals communicate.

For the time being, Rapoport and his colleagues are only testing their electrodes in volunteers who are already scheduled to have brain surgery. The electrodes are implanted, tested, and removed during a planned operation. The company announced in May that the team had broken a record for the greatest number of electrodes placed on a human brain at any one time—a whopping 4,096.

Rapoport hopes the US Food and Drug Administration will approve his device in the coming months. “That will unlock … what we hope will be a new standard of care,” he says.


Now read the rest of The Checkup

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Precision Neuroscience is one of a handful of companies leading the search for a new brain-computer interface. Cassandra Willyard covered the key players in a recent edition of the Checkup.

Brain implants can do more than treat disease or aid communication. They can change a person’s sense of self. This was the case for Rita Leggett, who was devastated when her implant was removed against her will. I explored whether experiences like these should be considered a breach of human rights in a piece published last year.

Ian Burkhart, who was paralyzed as a result of a diving accident, received a brain implant when he was 24 years old. Burkhart learned to use the implant to control a robotic arm and even play Guitar Hero. But funding issues and an infection meant the implant had to be removed. “When I first had my spinal cord injury, everyone said: ‘You’re never going to be able to move anything from your shoulders down again,’” Burkhart told me last year. “I was able to restore that function, and then lose it again. That was really tough.”

A couple of years ago, a brain implant allowed a locked-in man to communicate in full sentences by thought alone—a world first, the researchers claimed. He used it to ask for soup and beer, and to tell his carers “I love my cool son.”

Electrodes that stimulate the brain could be used to improve a person’s memory. The “memory prosthesis,” which has been designed to mimic the way our brains create memories, appears to be most effective in people who have poor memories to begin with.

From around the web

Do you share DNA with Ludwig van Beethoven, or perhaps a Viking? Tests can reveal genetic links, but they are not always clear, and the connections are not always meaningful or informative. (Nature)

This week marks 79 years since the United States dropped atomic bombs on Hiroshima and Nagasaki. Survivors share their stories of what it’s like to live with the trauma, stigma, and survivor’s guilt caused by the bombs—and why weapons like these must never be used again. (New York Times)

At least 19 Olympic athletes have tested positive for covid-19 in the past two weeks. The rules allow them to compete regardless. (Scientific American)

Honey contains a treasure trove of biological information, including details about the plants that supplied the pollen and the animals and insects in the environment. It can even tell you something about the bees’ “micro-bee-ota.” (New Scientist)

How covid conspiracy theories led to an alarming resurgence in AIDS denialism

7 August 2024 at 11:00

Several million people were listening in February when Joe Rogan falsely declared that “party drugs” were an “important factor in AIDS.” His guest on The Joe Rogan Experience, the former evolutionary biology professor turned contrarian podcaster Bret Weinstein, agreed with him: The “evidence” that AIDS is not caused by HIV is, he said, “surprisingly compelling.”

During the show, Rogan also asserted that AZT, the earliest drug used in the treatment of AIDS, killed people “quicker” than the disease itself—another claim that’s been widely repeated even though it is just as untrue.

Speaking to the biggest podcast audience in the world, the two men were promoting dangerous and false ideas—ideas that were in fact debunked and thoroughly disproved decades ago. 

But it wasn’t just them. A few months later, the New York Jets quarterback Aaron Rodgers, four-time winner of the NFL’s MVP award, alleged that Anthony Fauci, who led the National Institute of Allergy and Infectious Diseases for 38 years, had orchestrated the government’s response to the AIDS crisis for personal gain and to promote AZT, which Rodgers also depicted as “killing people.” Though he was speaking to a much smaller audience, on a podcast hosted by a jujitsu fighter turned conspiracy theorist, a clip of the interview was re-shared on X, where it’s been viewed more than 13 million times

Rodgers was repeating claims that appear in The Real Anthony Fauci, a 2021 book by Robert F. Kennedy Jr.—a work that has renewed relevance as the anti-vaccine activist makes a long-shot but far-from-inconsequential run for the White House. The book, which depicts the elderly immunologist as a Machiavellian figure who used both the AIDS and covid pandemics for his own ends, has reportedly sold 1.3 million copies across all formats. 

“When I hear [misinformation] like that, I just hope it doesn’t get traction,” says Seth Kalichman, a professor of psychology at the University of Connecticut and the author of Denying AIDS: Conspiracy Theories, Pseudoscience, and Human Tragedy.

But it already has. These comments and others like them add up to a small but unmistakable resurgence in AIDS denialism—a false collection of theories arguing either that HIV doesn’t cause AIDS or that there’s no such thing as HIV at all.  

The ideas here were initially promoted by a cadre of scientists from unrelated fields, as well as many science-adjacent figures and self-proclaimed investigative journalists, back in the 1980s and ’90s. But as more and more evidence stacked up against them, and as more people with HIV and AIDS started living longer lives thanks to effective new treatments, their claims largely fell out of favor.

At least until the coronavirus arrived. 

People participate in a rally and march against COVID-19 mandates in NYC. Man in foreground holds sign that reads, "Down with Big Pharma, Big Tech and the entire Cabal."
The covid-19 pandemic brought together people with a mistrust of institutions to rally and march against masks and vaccines.
SPENCER PLATT/GETTY IMAGES

Following the pandemic, a renewed suspicion of public health figures and agencies is giving new life to ideas that had long ago been pushed to the margins. And the impact is far from confined to the dark corners of the web. Arguments spreading rapidly online are reaching millions of people—and, in turn, potentially putting individual patients at risk. The fear is that AIDS denialism could once again spread in the way that covid denialism has: that people will politicize the illness, call its most effective and evidence-based treatments into question, and encourage extremist politicians to adopt these views as the basis for policy. And if it continues to build, this movement could threaten the bedrock knowledge about germs and viruses that underpin the foundation of modern health care and disease prevention, creating dangerous confusion among the public at a deeply inopportune time.   

Before they promoted bunk information on HIV and AIDS, Rogan, Kennedy, and Rodgers were spreading fringe theories about the coronavirus’s origins, as well as loudly questioning basic public health measures like vaccines, social distancing, and masks. All three men have also boosted the false idea that ivermectin, an antiparasitic drug, is a treatment or preventative for covid that is being kept from the American public for sinister reasons at the behest of Big Pharma. 

“The AIDS denialists have come from the covid denialists,” says Tara Smith, an infectious-disease epidemiologist and a professor at Kent State University’s College of Public Health, who tracks conspiratorial narratives about illness and public health. She saw them emerging first in social media groups driven by covid skepticism, with people asking, as she puts it, “If covid doesn’t exist, what else have we been lied to about?” 

“Unlike HIV, covid impacted everybody, and the policy decisions that were made around covid impacted everybody.”

The covid pandemic was a particularly fertile ground for such suspicion, Kalichman notes, because “unlike HIV, covid impacted everybody, and the policy decisions that were made around covid impacted everybody.”

“The covid phenomenon—not the pandemic but the phenomenon around it—created this opportunity for AIDS denialists to reemerge,” he adds. Denialists like Peter Duesberg, the now-infamous Berkeley biologist who first promoted the idea that AIDS is caused by pharmaceuticals or recreational drugs, and Celia Farber and Rebecca V. Culshaw, an independent journalist and researcher, respectively, who have both written critically about what they see as the “official” narrative of HIV/AIDS. (Farber tells MIT Technology Review that she uses the term “AIDS dissent” rather than “denialism”: “‘Denialism’ is a religious and vituperative word.” ) 

In addition to the renewed skepticism toward public health institutions, the reanimated AIDS denialist movement is being supercharged by technological tools that didn’t exist the first time around: platforms with gigantic reach like X, Substack, Amazon, and Spotify, as well as newer ones that don’t have specific moderation policies around medical misinformation, like Rumble, Gab, and Telegram. 

Spotify, for one, has largely declined to curb or moderate Rogan in any meaningful way, while also paying him an eye-watering amount of money; the company inked a $250 million renewal deal with him in February, just weeks before he and Weinstein made their false remarks about AIDS. Amazon, meanwhile, is currently offering Duesberg’s long-out-of-print 1996 book Inventing AIDS for free with a trial of its Audible program, and three of Culshaw’s books are available for free with either an Audible or Kindle Unlimited trial. Farber, meanwhile, has a Substack with more than 28,000 followers.

Peter Duesberg
Peter Duesberg is now 87 years old and no longer actively speaking publicly, but his decades-old theories about AIDS are finding new life online.
AP PHOTO/SUSAN RAGAN

(Spotify, Substack, Rumble, and Telegram did not respond to requests for comment, while Meta and Amazon confirmed receipt of a request for comment but did not answer questions, and X’s press office provided only an auto-response. An email to Gab’s press address was returned as undeliverable.) 

While this wave of AIDS denialism doesn’t currently have the reach and influence that the movement had in the past, it still has potentially serious consequences for patients as well as the general public. If these ideas gain enough traction, particularly among elected officials, they could endanger funding for AIDS research and treatments. Public health researchers are still haunted by the period in the 1990s and early 2000s when AIDS denial became official policy in South Africa; one analysis estimates that between just 2000 and 2005, more than 300,000 people died prematurely as a result of the country’s bad public health policies. On an individual level, there could also be devastating results if people with HIV are discouraged from seeking treatment or from trying to prevent the virus’s spread by taking medication or using condoms; a 2010 study has shown that a belief in denialist rhetoric among people with HIV is associated with medication refusal and poor health outcomes, including increased incidence of hospitalization, HIV-related symptoms, and detectable viral loads. 

Above all, the revival of this particular slice of medical misinformation is another troubling sign for the ways that tech platforms can deepen distrust in our public health system. The same tech-savvy denialist playbook is already being deployed in the wider “health freedom” space to create confusion and suspicion around other serious diseases, like measles, and to challenge more foundational claims about the science of viruses—that is, to posit that viruses don’t exist at all, or are harmless and can’t cause illness. (A Gab account solely dedicated to the idea that all viruses are hoaxes has more than 3,000 followers.) 

As Smith puts it, “We are not in a good place regarding [trust in] all of our public health institutions right now.” 

Capitalizing on confusion

One reason AIDS and covid denialists have been able to build similar and interlocking movements that inveigh against government science is that the early days of the two viruses were markedly similar: full of confusion, mystery, and skepticism. 

In 1981, James Curran served on a task force investigating the first five known cases of what was then a novel disease. “There were a lot of theories about what caused it,” says Curran, an epidemiologist who is now a dean emeritus at Emory University’s Rollins School of Public Health and previously spent 25 years working at the US Centers for Disease Control and Prevention, serving ultimately as the assistant surgeon general. He and his colleagues had all previously studied sexually transmitted infections that affected gay men and people who injected drugs. With that context, the researchers saw the early patterns of the disease as “indicative of a likely sexually transmissible agent.” 

Not everyone agreed, Curran says: “Other people saw poppers or other drugs or accumulation of semen or environmental factors. Some of these things came from the backgrounds that people had, or they came from the simple denial that it could possibly be a new virus.” 

The first wave of contrarian ideas about AIDS, then, was less true “denialism” and more the understandable confusion and differences of opinion that can emerge around a new disease. Yet as time went on, “the death rates were increasing dramatically,” says Lindsay Zafir, a distinguished lecturer in anthropology and interdisciplinary programs at the City College of New York who wrote her dissertation on the emergence and evolution of AIDS denialism. “Some people started to wonder whether scientists actually knew what they were doing.” 

This led to the emergence of a wider round of more deliberate AIDS disinformation, which was picked up by mainstream publications. In the late 1980s, Spin magazine printed a series of stories that platformed denialist ideas and figures, including interviews with Duesberg, who’d already gained attention for his arguments that AIDS was caused by pharmaceutical drugs and not by HIV. The magazine also published pieces by Farber, a journalist who has described herself becoming progressively more sympathetic to the AIDS denialist cause after interviewing Duesberg. In 1991, the Los Angeles Times published a piece that asked whether Duesberg was “a hero or a heretic” for his “controversial” arguments about AIDS. 

The tides began to turn only in 1995, when the first generation of antiretroviral therapies emerged to treat AIDS and deaths finally, mercifully, began to drop across the United States. 

“Mbeki famously said, Your scientist says this, mine says that—which scientist is right? When that confusion exists, that’s the real vulnerability.” 

Still, the denialist movement continued to grow, with next-generation leaders who were, like Duesberg and Farber, publicity savvy and (perhaps unsurprisingly) quick adopters of the earliest versions of the internet. This notably included Christine Maggiore, who was HIV-positive herself and who founded the group Alive & Well AIDS Alternatives. Long before social media, she and her peers used the internet to foster community, offering links on their websites to hotlines and in-person meetings. 

Kent State’s Smith and Steven P. Novella, now a clinical neurologist and associate professor at Yale, wrote a paper in 2007 about how the internet had become a powerful force for AIDS denialism. It was “a fertile and unrefereed medium” for denialist ideas and one of just a few common tools to make counterarguments in the face of the widespread scientific agreement on AIDS that dominated medical literature. 

Around this time, Farber wrote another big piece, this time in Harper’s, on the so-called AIDS dissidents, which in turn generated a firestorm of criticism and corrections and revived the debate for a new era of readers. 

“It’s hard to quantify how much influence those types of people had,” Smith says. She points out that Maggiore was even promoted by Nate Mendel of the Foo Fighters. “It’s hard to know how many people followed her advice,” Smith emphasizes. “But certainly a lot of people heard it.” 

Thabo Mbeki speaking at a conference in 2016
Former South African president Thabo Mbeki incorporated AIDS denialism into his public policy, denying patients in the country access to antiretroviral drugs.
MAKSIM BLINOV/SPUTNIK VIA AP IMAGES

In a devastating turn, one of those people was Thabo Mbeki, who became the second democratically elected president of South Africa in 1999. Mbeki was skeptical of antiretrovirals to treat AIDS, and as the Lancet points out, both Mbeki and his health minister promoted the work of Western AIDS skeptics. In the summer of 2000, Mbeki hosted a presidential advisory panel that included denialists like Duesberg; Farber tells MIT Technology Review that she was also present. Just a few weeks later, the South African president met privately with Maggiore

Curran, the former CDC official, visited South Africa during this era and remembers how officials “said they would throw doctors in jail” if they provided AZT to pregnant women.

“Mbeki famously said, Your scientist says this, mine says that—which scientist is right?” Kalichman says. “When that confusion exists, that’s the real vulnerability.” 

Mbeki left office in 2008. And while AIDS denialism didn’t exactly disappear by the 2010s, it did largely recede into relative obscurity, beaten back by clear evidence that antiretroviral drugs were working. 

There were also meticulous fact-based campaigns from groups like AIDSTruth, which was founded following Farber’s 2006 Harper’s article. This group gained traction online, systematically debunking arguments from denialists on a bare-bones website and using hyperlinks to guide people quickly to science-based material on each point—a somewhat novel approach at the time. 

By 2015, the decline of denialism was so complete that AIDSTruth stopped active work, believing that its mission was complete. The group wrote, “We have long since reached the point where we—the people who have in one way or another been involved in running this website—believe that AIDS denialism died as an effective political force.” 

Of course, it didn’t take too long to see the work was far from complete. 

Growing the “beehive”

Kalichman, from the University of Connecticut, has compared the world of AIDS denial to a “beehive”: It looks like a chaotic mix of people pursuing bad science and debunked ideas for their own particular ends. But if you look closer, what appears to be a swarm is actually “very well organized.” The modern, post-covid variety is no different. 

The new wave of denialists often don’t count their theories on AIDS as their sole pseudoscientific interest; rather, it’s part of a whole bouquet of bad ideas.

Robert Kennedy Jr. at the Washington state capitol among a group of anti-vax protestors. Sign in the foreground reads, " Vaccines the more you Know...the more you No!"
Robert F. Kennedy Jr. has been vocal in his support of anti-vaccine causes since long before his current run for president.
AP PHOTO/TED S. WARREN

These individuals seem to have arrived at revisionist and denialist ideas through a broad-based skepticism of public health, a rejection of what they see as Big Pharma’s meddling, and a particular, visceral disgust toward Fauci. Kennedy, specifically, attributes almost superhuman powers to Fauci, claiming in one 2022 tweet—referencing the Mafia code of silence—that he “purchased omertà among virologists globally with a total of $37 billion in annual payoffs in research grants.” The tweet has been liked more than 26,000 times. 

Kennedy’s book “changed everything,” Celia Farber says. “I answered his questions … and was included and quoted in the book. This led to a chance for me to once again be a professional writer, on Substack.” 

The new guard has also been comfortable reviving the oldest debunked ideas. Both Rogan and Kennedy, for instance, have claimed that poppers could be the cause of AIDS. “A hundred percent of the people who died in the first thousand [with] AIDS were people who were addicted to poppers, which are known to cause Kaposi sarcoma in rats,” Kennedy told an audience in a speech whose date isn’t clear; a video of the remarks has recently been circulating widely. “And they were people who were part of a gay lifestyle where they were burning the candle at both ends.” (Kennedy’s presidential campaign did not respond to a request for comment.) 

Some have even given fresh life to the old guard. Duesberg is now 87 and is no longer active in the public sphere (and his wife told MIT Technology Review that his health did not allow him to sit for an interview or answer questions via email). But the basic shape of his arguments—obfuscating the causes of AIDS, the treatments, and the nature of the disease itself—continue to live on. Rogan actually hosted Duesberg on his podcast in 2012, a decision that generated relatively few headlines at the time—likely because Rogan hadn’t yet become so popular and America’s crisis of disinformation and medical distrust was less pronounced. Rogan and Weinstein praised Duesberg in their recent conversation, asserting that he’d been “demonized” for his arguments about AZT. (Weinstein did not respond to a request for comment. Several attempts to reach Spotify through multiple channels did not get responses. Attempts to reach Rogan through Spotify and one of his producers also did not receive responses.) 

Aaron Rodgers at a press conference
Before Aaron Rodgers spoke falsely about AIDS and AZT, he and the Green Bay Packers were fined for conduct in violation of the NFL’s covid policies.
SARAH STIER/GETTY IMAGES

The support seems to largely go both ways. Culshaw has written that even critical stories about Rodgers are helpful to the cause: “The more hit pieces are published, the more the average citizen—especially the average post-covid citizen—will become curious and begin to look into the issue. And once you’ve looked into it far enough, you cannot unsee what you’ve seen.” 

Culshaw and Farber have also been empowered by the new ability to command their own megaphones online. Farber, for instance, is now primarily active on Substack, with a newsletter that is a mix of HIV/AIDS content and general conspiracy theorizing. Her current work refers to HIV/AIDS as a “PSY OP” (caps hers); she presents herself as a soldier in a long war against government propaganda, one in which covid is the latest salvo. 

Farber says she sees her arguments gaining ground. “What’s happening now is that the general public are learning about the buried history,” she writes to MIT Technology Review. “People are very interested in the HIV ‘thing’ these days, to my eternal astonishment,” she adds, writing that Kennedy’s book “changed everything.” She says, “I answered his questions about HIV war history and was included and quoted in the book. This led to a chance for me to once again be a professional writer, on Substack.” 

Culshaw (who now uses the name Culshaw Smith) strikes a similar tone, though she is a less prominent figure. A mathematician and self-styled HIV researcher, she published her first book in 2007; it claimed to use mathematical evidence to prove that HIV doesn’t cause AIDS. 

In 2023 she published another AIDS denial book, this one with Skyhorse, a press that traffics heavily in conspiracy theories and pseudoscience, and which published Kennedy’s book on Fauci. She gained some level of notoriety when the book was distributed by publishing giant Simon & Schuster, leading to protests outside its headquarters from the LGBT rights advocacy groups GLAAD and ACT UP NY. Though Simon & Schuster appears to continue to distribute the book, that pushback has provided the basis for her new act: life after “cancellation.” She produced a short memoir last year that describes the furor—a history Culshaw presents as a dramatic moment in the suppression of AIDS truth. This is one of the books now available for free on Amazon through a Kindle Unlimited trial. (Simon & Schuster did not respond to a request for comment. Culshaw did not respond to a request for comment sent through Substack.)

The argument that she’s been “canceled” by the scientific establishment holds tremendous sway with disease denialists online, who are always eager to seize on cases where they perceive the government to be repressing and censoring “alternative” views. In May, Chronicles, an online right-wing magazine, approvingly tied together Rodgers with the broader web of AIDS denialists, including Culshaw, Duesberg, and others—holding them up as heroic figures who’d been unfairly dismissed as “conspiracy theorists” and who’d done well to challenge medical expertise that the magazine denigrated as “white coat supremacy.” (A request for comment for Rodgers through a representative did not receive a response.)

Platforming denial

AIDS denialism and revisionism are resurging in the midst of bitter ongoing arguments over what kinds of things should be allowed to exist on online platforms. Spotify, for instance, has clear rules that prohibit “asserting that AIDS, COVID-19, cancer or other serious life threatening diseases are a hoax or not real,” and specific rules against “dangerous and deceptive content” that are both thoughtful and clearly articulated. Yet Rogan’s program seems to be exempt from these rules or manages to skirt them; after all, he and Weinstein did not suggest that AIDS isn’t real, per se, but instead promoted debunked ideas about its cause. 

While Amazon and Meta have misinformation policies of some kind, they clearly do not prevent AIDS denial books from being sold or denialist arguments from being shared. (Amazon also has content guidelines for books that ban obvious things like hate speech, pornography, or the promotion of terrorism, but they do not specifically mention medical misinformation.)

The difficulty of policing false or unproven health information across all these different platforms, in all the forms it can take, is immense. In 2019, for instance, Facebook allowed misleading ads from personal injury lawyers claiming that PrEP, or pre-exposure prophylaxis drugs, can cause bone and kidney damage; it took action only after a sustained outcry from LGBT groups

“It’s one of those things that either plants seeds of doubt or encourages those to grow if they’re already there.” 

In a sign of how entrenched some of these things can be, there’s a YouTube channel originally called Rethinking AIDS—now known as Question Everything—that has been active for 14 years, sharing interviews with denialists. The channel has 16,000 subscribers, and its most popular videos have upwards of half a million views. Another page, devoted to a conspiratorial documentary about AIDS, has been active since 2009, and its most popular video has nearly 300,000 views. (A YouTube spokesperson tells MIT Technology Review it has “developed our approach to medical misinformation over many years, in close alignment with health authorities around the world” and that it prominently features “content and information from high-quality health sources … in search results and recommendations related to HIV/AIDS.”) 

Meanwhile, on platforms like the Elon Musk–owned X, formerly known as Twitter, there is little moderation happening at all. The company removed its ban on covid misinformation in 2022, to almost immediate effect: misinformation and propaganda of all kinds has flourished, including HIV/AIDS denial. One widely circulated video depicts the late biochemist Kary Mullis talking about the moment he first “really questioned” the predominant HIV narrative. 

Complementing these more established spaces are newer, more niche platforms like Rumble and Telegram, which don’t have any moderation policies to address medical misinformation and proudly tout a commitment to free speech that means they do very little about any kind of misinformation at all, no matter how noxious. 

hand holding phone with the Spotify page for The Joe Rogan Experience
Joe Rogan’s podcast, with an audience of 14.5 million just on Spotify, has hosted a number of guests expressing anti-vaccine sentiments.
PHOTO ILLUSTRATION BY CINDY ORD/GETTY IMAGES

Telegram, which is one of the most popular messaging apps in Russia, does have a general “verified information” policy. The statement of this policy links to a post by its CEO, Pavel Durov, that says “spreading the truth will always be a more efficient strategy than engaging in censorship.” Discussions of HIV among Telegram’s current and most active misinformation peddlers often compare it to covid, characterizing both as “manufactured” viruses. One widely shared post by the anti-vaccine activist Sherri Tenpenny claims that covid-19 was created by “splicing” HIV into a coronavirus to “inflict maximum harm,” a bizarre lie that’s also meant to strengthen the unproven idea that covid was created in a lab. Telegram is also a fertile ground for sharing phony HIV cures; one group with 43,000 followers has promoted an oil that it claims is used in Nigeria. 

When YouTube began to crack down on medical misinformation during the height of the pandemic, conservative and conspiratorial content creators went to Rumble instead. The company claims it saw a 106% revenue increase last year and now has an average of 67 million monthly active users. A clip of Rogan talking about Duesberg’s AIDS-related claims has racked up 30,000 views in the last two years, and an interview with Farber by Joseph Mercola, a major player in the natural-health and anti-vaccine worlds, has gotten more than 300,000 views since it was posted there earlier this year

The concern with these kinds of falsehoods, Smith says, is always that patient populations, communities at high risk for HIV, or populations with real histories of medical mistreatment, like Black and Native people, “think there might be a grain of truth and start to doubt if they need to be tested or continue treatment or things like that.” She adds, “It’s one of those things that either plants seeds of doubt or encourages those to grow if they’re already there.” 

But it’s far more concerning when people like Rogan, who have a massive reach, take up the cause. “They just have such a huge platform, and those stories are scary and they spread,” Smith says. “Once they do that, it’s so hard for scientists to fight that.” 

The offline impact 

For all the work AIDS denialists are doing to try to grow their numbers, Kalichman remains hopeful that they’re unlikely to make significant inroads. The most profound reason, he believes, is that many people now know someone living with HIV—a friend, a family member, a celebrity. As a result, many more people are directly familiar with how life-altering current HIV treatments have been. 

“This isn’t the ’90s,” he says. “People are taking one pill once a day and living really healthy lives. If a person with HIV smokes, they’re much more likely to die of a smoking-related illness [than HIV] if their HIV Is being treated.” 

Even the much stranger and more esoteric “terrain theory” seems to be making a modest comeback in alternative online spaces; the idea is that germs don’t cause illness in a healthy person whose “terrain” is sound thanks to vitamins, exercise, and sunlight.

Yet the risk doesn’t necessarily hang solely on how many people buy into the false information—but who does. Among people who have been studying AIDS denialism for decades, the biggest concern is ultimately that someone in public office will take notice and begin formally acting on those ideas. If that happens, Curran, the former assistant surgeon general, worries it could jeopardize funding for PEPFAR (the United States President’s Emergency Plan for AIDS Relief), the enormously successful public health program that has supported HIV testing, prevention, and treatment in lower-resource countries since the George W. Bush administration. 

The current political environment further exacerbates the risk: Donald Trump has said that if he is elected again, he will cut federal funding to schools with mask or vaccine mandates, and Florida’s surgeon general, Joseph Ladapo, allowed parents to continue sending unvaccinated kids to school in the midst of a measles outbreak. 

All it takes, Kalichman says, is for “someone who’s sitting in a policymaker’s chair in a state health department” to take AIDS denial arguments seriously. “A lot of damage can be done.” (He expresses relief, however, that Trump and his wing of the Republican Party have not yet taken up the particular cause of AIDS denialists: “Thank goodness.”)  

Florida Surgeon Gen. Dr. Joseph A. Ladapo speaking at a podium with Ron DeSantis behind him
Florida Surgeon General Joseph Ladapo’s letter to parents during a measles outbreak ran counter to the CDC’s recommended guidelines.
AP PHOTO/CHRIS O’MEARA

Then there is the fact that the same kind of denialist campaign is already being deployed with other diseases. Christiane Northrup, a former ob-gyn and a significant figure in natural health and related conspiratorial thinking, has recently been on Telegram sharing an old lie that a German court ruled the measles virus “does not exist.” (Northrup did not respond to a request for comment.)

On its own, if it were just bunk HIV theories recirculating, “I wouldn’t be as worried about it,” Smith says. “But in this broader anti-covid, anti-vaccine, and everything about germ theory being denied—that’s what worries me.” 

By trying to effectively decouple cause and effect—claiming that HIV doesn’t cause AIDS, that measles isn’t caused by a virus and is instead a vitamin deficiency or caused by the MMR (measles, mumps, and rubella) vaccine itself—these movements discourage people from treating or trying to prevent serious and contagious illnesses. They try to sow doubt about the very nature of viruses themselves, a global gesture toward doubt, distrust, and minimization of serious diseases. Even the much stranger and more esoteric “terrain theory” seems to be making a modest comeback in alternative online spaces; the idea is that germs don’t cause illness in a healthy person whose “terrain” is sound thanks to vitamins, exercise, and sunlight. 

These kinds of false claims, Smith points out, are resurging at a particularly inopportune time, when the public health world is already trying to prepare for the next pandemic. “We’re out of the emergency mode of the covid pandemic and trying to repair some of the damage to public health,” she says, “and thinking about another one.”

Curran also has a larger, more existential concern when he considers the lessons of the AIDS and covid pandemics: “The problem is, if you bad-mouth Fauci and his successors so much, the next epidemic people come around and they say, ‘Why should we trust these people?’ And the question is, who do we trust? 

“When bird flu gets out of cows and goes to humans, are we going to go to Joe Rogan for the answers?”

Anna Merlan is a senior reporter at Mother Jones and the author of the 2019 book Republic of Lies: American Conspiracy Theorists and Their Surprising Rise to Power.

A personalized AI tool might help some reach end-of-life decisions—but it won’t suit everyone

This article first appeared in The Checkup, MIT Technology Review’s weekly biotech newsletter. To receive it in your inbox every Thursday, and read articles like this first, sign up here.

This week, I’ve been working on a piece about an AI-based tool that could help guide end-of-life care. We’re talking about the kinds of life-and-death decisions that come up for very unwell people: whether to perform chest compressions, for example, or start grueling therapies, or switch off life support.

Often, the patient isn’t able to make these decisions—instead, the task falls to a surrogate, usually a family member, who is asked to try to imagine what the patient might choose if able. It can be an extremely difficult and distressing experience.  

A group of ethicists have an idea for an AI tool that they believe could help make things easier. The tool would be trained on information about the person, drawn from things like emails, social media activity, and browsing history. And it could predict, from those factors, what the patient might choose. The team describe the tool, which has not yet been built, as a “digital psychological twin.”

There are lots of questions that need to be answered before we introduce anything like this into hospitals or care settings. We don’t know how accurate it would be, or how we can ensure it won’t be misused. But perhaps the biggest question is: Would anyone want to use it?

To answer this question, we first need to address who the tool is being designed for. The researchers behind the personalized patient preference predictor, or P4, had surrogates in mind—they want to make things easier for the people who make weighty decisions about the lives of their loved ones. But the tool is essentially being designed for patients. It will be based on patients’ data and aims to emulate these people and their wishes.

This is important. In the US, patient autonomy is king. Anyone who is making decisions on behalf of another person is asked to use “substituted judgment”—essentially, to make the choices that the patient would make if able. Clinical care is all about focusing on the wishes of the patient.

If that’s your priority, a tool like the P4 makes a lot of sense. Research suggests that even close family members aren’t great at guessing what type of care their loved ones might choose. If an AI tool is more accurate, it might be preferable to the opinions of a surrogate.

But while this line of thinking suits American sensibilities, it might not apply the same way in all cultures. In some cases, families might want to consider the impact of an individual’s end-of-life care on family members, or the family unit as a whole, rather than just the patient.

“I think sometimes accuracy is less important than surrogates,” Bryanna Moore, an ethicist at the University of Rochester in New York, told me. “They’re the ones who have to live with the decision.”

Moore has worked as a clinical ethicist in hospitals in both Australia and the US, and she says she has noticed a difference between the two countries. “In Australia there’s more of a focus on what would benefit the surrogates and the family,” she says. And that’s a distinction between two English-speaking countries that are somewhat culturally similar. We might see greater differences in other places.

Moore says her position is controversial. When I asked Georg Starke at the Swiss Federal Institute of Technology Lausanne for his opinion, he told me that, generally speaking, “the only thing that should matter is the will of the patient.” He worries that caregivers might opt to withdraw life support if the patient becomes too much of a “burden” on them. “That’s certainly something that I would find appalling,” he told me.

The way we weigh a patient’s own wishes and those of their family members might depend on the situation, says Vasiliki Rahimzadeh, a bioethicist at Baylor College of Medicine in Houston, Texas. Perhaps the opinions of surrogates might matter more when the case is more medically complex, or if medical interventions are likely to be futile.

Rahimzadeh has herself acted as a surrogate for two close members of her immediate family. She hadn’t had detailed discussions about end-of-life care with either of them before their crises struck, she told me.

Would a tool like the P4 have helped her through it? Rahimzadeh has her doubts. An AI trained on social media or internet search history couldn’t possibly have captured all the memories, experiences, and intimate relationships she had with her family members, which she felt put her in good stead to make decisions about their medical care.

“There are these lived experiences that are not well captured in these data footprints, but which have incredible and profound bearing on one’s actions and motivations and behaviors in the moment of making a decision like that,” she told me.


Now read the rest of The Checkup

Read more from MIT Technology Review’s archive

You can read the full article about the P4, and its many potential benefits and flaws, here.

This isn’t the first time anyone has proposed using AI to make life-or-death decisions. Will Douglas Heaven wrote about a different kind of end-of-life AI—a technology that would allow users to end their own lives in a nitrogen-gas-filled pod, should they wish.

AI is infiltrating health care in lots of other ways. We shouldn’t let it make all the decisions—AI paternalism could put patient autonomy at risk, as we explored in a previous edition of The Checkup.

Technology that lets us speak to our dead relatives is already here, as my colleague Charlotte Jee found when she chatted with the digital replicas of her own parents.

What is death, anyway? Recent research suggests that “the line between life and death isn’t as clear as we once thought,” as Rachel Nuwer reported last year.

From around the web

When is someone deemed “too male” or “too female” to compete in the Olympics? A new podcast called Tested dives into the long, fascinating, and infuriating history of testing and excluding athletes on the basis of their gender and sex. (Sequencer)

There’s a dirty secret among Olympic swimmers: Everyone pees in the pool. “I’ve probably peed in every single pool I’ve swam in,” said Lilly King, a three-time Olympian for Team USA. “That’s just how it goes.” (Wall Street Journal)

When saxophonist Joey Berkley developed a movement disorder that made his hands twist into pretzel shapes, he volunteered for an experimental treatment that involved inserting an electrode deep into his brain. That was three years ago. Now he’s releasing a new suite about his experience, including a frenetic piece inspired by the surgery itself. (NPR)

After a case of mononucleosis, Jason Werbeloff started to see the people around him in an entirely new way—literally. He’s one of a small number of people for whom people’s faces morph into monstrous shapes, with bulging sides and stretching teeth, because of a rare condition called prosopometamorphopsia. (The New Yorker)  

How young are you feeling today? Your answer might depend on how active you’ve been, and how sunny it is. (Innovation in Aging)

End-of-life decisions are difficult and distressing. Could AI help?

A few months ago, a woman in her mid-50s—let’s call her Sophie—experienced a hemorrhagic stroke. Her brain started to bleed. She underwent brain surgery, but her heart stopped beating.

Sophie’s ordeal left her with significant brain damage. She was unresponsive; she couldn’t squeeze her fingers or open her eyes when asked, and she didn’t flinch when her skin was pinched. She needed a tracheostomy tube in her neck to breathe and a feeding tube to deliver nutrition directly to her stomach, because she couldn’t swallow. Where should her medical care go from there?

This difficult question was left, as it usually is in these kinds of situations, to Sophie’s family members, recalls Holland Kaplan, an internal-medicine physician at Baylor College of Medicine who was involved in Sophie’s care. But the family couldn’t agree. Sophie’s daughter was adamant that her mother would want to stop having medical treatments and be left to die in peace. Another family member vehemently disagreed and insisted that Sophie was “a fighter.” The situation was distressing for everyone involved, including Sophie’s doctors.

End-of-life decisions can be extremely upsetting for surrogates, the people who have to make those calls on behalf of another person, says David Wendler, a bioethicist at the US National Institutes of Health. Wendler and his colleagues have been working on an idea for something that could make things easier: an artificial-intelligence-based tool that can help surrogates predict what patients themselves would want in any given situation.

The tool hasn’t been built yet. But Wendler plans to train it on a person’s own medical data, personal messages, and social media posts. He hopes it could not only be more accurate at working out what the patient would want, but also alleviate the stress and emotional burden of difficult decision-making for family members.

Wendler, along with bioethicist Brian Earp at the University of Oxford and their colleagues, hopes to start building the tool as soon as they secure funding for it, potentially in the coming months. But rolling it out won’t be simple. Critics wonder how such a tool can ethically be trained on a person’s data, and whether life-or-death decisions should ever be entrusted to AI.

Live or die

Around 34% of people in a medical setting are considered to be unable to make decisions about their own care for various reasons. They may be unconscious, for example, or unable to reason or communicate. This figure is higher among older individuals—one study of people over 60 in the US found that 70% of those faced with important decisions about their care lacked the capacity to make those decisions themselves. “It’s not just a lot of decisions—it’s a lot of really important decisions,” says Wendler. “The kinds of decisions that basically decide whether the person is going to live or die in the near future.”

Chest compressions administered to a failing heart might extend a person’s life. But the treatment might lead to a broken sternum and ribs, and by the time the person comes around—if ever—significant brain damage may have developed. Keeping the heart and lungs functioning with a machine might maintain a supply of oxygenated blood to the other organs—but recovery is no guarantee, and the person could develop numerous infections in the meantime. A terminally ill person might want to continue trying hospital-administered medications and procedures that could offer a few more weeks or months. But someone else might want to forgo those interventions and be more comfortable at home.

Only around one in three adults in the US completes any kind of advance directive—a legal document that specifies the end-of-life care they might want to receive. Wendler estimates that over 90% of end-of-life decisions end up being made by someone other than the patient. The role of a surrogate is to make that decision based on beliefs about how the patient would want to be treated. But people are generally not very good at making these kinds of predictions. Studies suggest that surrogates accurately predict a patient’s end-of-life decisions around 68% of the time.

The decisions themselves can also be extremely distressing, Wendler adds. While some surrogates feel a sense of satisfaction from having supported their loved ones, others struggle with the emotional burden and can feel guilty for months or even years afterwards. Some fear they ended the life of their loved ones too early. Others worry they unnecessarily prolonged their suffering. “It’s really bad for a lot of people,” says Wendler. “People will describe this as one of the worst things they’ve ever had to do.”

Wendler has been working on ways to help surrogates make these kinds of decisions. Over 10 years ago, he developed the idea for a tool that would predict a patient’s preferences on the basis of characteristics such as age, gender, and insurance status. That tool would have been based on a computer algorithm trained on survey results from the general population. It may seem crude, but these characteristics do seem to influence how people feel about medical care. A teenager is more likely to opt for aggressive treatment than a 90-year-old, for example. And research suggests that predictions based on averages can be more accurate than the guesses made by family members.

In 2007, Wendler and his colleagues built a “very basic,” preliminary version of this tool based on a small amount of data. That simplistic tool did “at least as well as next-of-kin surrogates” in predicting what kind of care people would want, says Wendler.

Now Wendler, Earp and their colleagues are working on a new idea. Instead of being based on crude characteristics, the new tool the researchers plan to build will be personalized. The team proposes using AI and machine learning to predict a patient’s treatment preferences on the basis of personal data such as medical history, along with emails, personal messages, web browsing history, social media posts, or even Facebook likes. The result would be a “digital psychological twin” of a person—a tool that doctors and family members could consult to guide a person’s medical care. It’s not yet clear what this would look like in practice, but the team hopes to build and test the tool before refining it.

The researchers call their tool a personalized patient preference predictor, or P4 for short. In theory, if it works as they hope, it could be more accurate than the previous version of the tool—and more accurate than human surrogates, says Wendler. It could be more reflective of a patient’s current thinking than an advance directive, which might have been signed a decade beforehand, says Earp.

A better bet?

A tool like the P4 could also help relieve the emotional burden surrogates feel in making such significant life-or-death decisions about their family members, which can sometimes leave people with symptoms of post-traumatic stress disorder, says Jennifer Blumenthal-Barby, a medical ethicist at Baylor College of Medicine in Texas.

Some surrogates experience “decisional paralysis” and might opt to use the tool to help steer them through a decision-making process, says Kaplan. In cases like these, the P4 could help ease some of the burden surrogates might be experiencing, without necessarily giving them a black-and-white answer. It might, for example, suggest that a person was “likely” or “unlikely” to feel a certain way about a treatment, or give a percentage score indicating how likely the answer is to be right or wrong. 

Kaplan can imagine a tool like the P4 being helpful in cases like Sophie’s, where various family members might have different opinions on a person’s medical care. In those cases, the tool could be offered to these family members, ideally to help them reach a decision together.

It could also help guide decisions about care for people who don’t have surrogates. Kaplan is an internal-medicine physician at Ben Taub Hospital in Houston, a “safety net” hospital that treats patients whether or not they have health insurance. “A lot of our patients are undocumented, incarcerated, homeless,” she says. “We take care of patients who basically can’t get their care anywhere else.”

These patients are often in dire straits and at the end stages of diseases by the time Kaplan sees them. Many of them aren’t able to discuss their care, and some don’t have family members to speak on their behalf. Kaplan says she could imagine a tool like the P4 being used in situations like these, to give doctors a little more insight into what the patient might want. In such cases, it might be difficult to find the person’s social media profile, for example. But other information might prove useful. “If something turns out to be a predictor, I would want it in the model,” says Wendler. “If it turns out that people’s hair color or where they went to elementary school or the first letter of their last name turns out to [predict a person’s wishes], then I’d want to add them in.”

This approach is backed by preliminary research from Earp and his colleagues, who have started running surveys to find out how individuals might feel about using the P4. This research is ongoing, but early responses suggest that people would be willing to try the model if there were no human surrogates available. Earp says he feels the same way. He also says that if the P4 and a surrogate were to give different predictions, “I’d probably defer to the human that knows me, rather than the model.”

Not a human

Earp’s feelings betray a gut instinct many others will share: that these huge decisions should ideally be made by a human. “The question is: How do we want end-of-life decisions to be made, and by whom?” says Georg Starke, a researcher at the Swiss Federal Institute of Technology Lausanne. He worries about the potential of taking a techno-solutionist approach and turning intimate, complex, personal decisions into “an engineering issue.” 

Bryanna Moore, an ethicist at the University of Rochester, says her first reaction to hearing about the P4 was: “Oh, no.” Moore is a clinical ethicist who offers consultations for patients, family members, and hospital staff at two hospitals. “So much of our work is really just sitting with people who are facing terrible decisions … they have no good options,” she says. “What surrogates really need is just for you to sit with them and hear their story and support them through active listening and validating [their] role … I don’t know how much of a need there is for something like this, to be honest.”

Moore accepts that surrogates won’t always get it right when deciding on the care of their loved ones. Even if we were able to ask the patients themselves, their answers would probably change over time. Moore calls this the “then self, now self” problem.

And she doesn’t think a tool like the P4 will necessarily solve it. Even if a person’s wishes were made clear in previous notes, messages, and social media posts, it can be very difficult to know how you’ll feel about a medical situation until you’re in it. Kaplan recalls treating an 80-year-old man with osteoporosis who had been adamant that he wanted to receive chest compressions if his heart were to stop beating. But when the moment arrived, his bones were too thin and brittle to withstand the compressions. Kaplan remembers hearing his bones cracking “like a toothpick,” and the man’s sternum detaching from his ribs. “And then it’s like, what are we doing? Who are we helping? Could anyone really want this?” says Kaplan.

There are other concerns. For a start, an AI trained on a person’s social media posts may not end up being all that much of a “psychological twin.” “Any of us who have a social media presence know that often what we put on our social media profile doesn’t really represent what we truly believe or value or want,” says Blumenthal-Barby. And even if we did, it’s hard to know how these posts might reflect our feelings about end-of-life care—many people find it hard enough to have these discussions with their family members, let alone on public platforms.

As things stand, AI doesn’t always do a great job of coming up with answers to human questions. Even subtly altering the prompt given to an AI model can leave you with an entirely different response. “Imagine this happening for a fine-tuned large language model that’s supposed to tell you what a patient wants at the end of their life,” says Starke. “That’s scary.”

On the other hand, humans are fallible, too. Vasiliki Rahimzadeh, a bioethicist at Baylor College of Medicine, thinks the P4 is a good idea, provided it is rigorously tested. “We shouldn’t hold these technologies to a higher standard than we hold ourselves,” she says.

Earp and Wendler acknowledge the challenges ahead of them. They hope the tool they build can capture useful information that might reflect a person’s wishes without violating privacy. They want it to be a helpful guide that patients and surrogates can choose to use, but not a default way to give black-and-white final answers on a person’s care.

Even if they do succeed on those fronts, they might not be able to control how such a tool is ultimately used. Take a case like Sophie’s, for example. If the P4 were used, its prediction might only serve to further fracture family relationships that are already under pressure. And if it is presented as the closest indicator of a patient’s own wishes, there’s a chance that a patient’s doctors might feel legally obliged to follow the output of the P4 over the opinions of family members, says Blumenthal-Barby. “That could just be very messy, and also very distressing, for the family members,” she says.

“What I’m most worried about is who controls it,” says Wendler. He fears that hospitals could misuse tools like the P4 to avoid undertaking costly procedures, for example. “There could be all kinds of financial incentives,” he says.

Everyone contacted by MIT Technology Review agrees that the use of a tool like the P4 should be optional, and that it won’t appeal to everyone. “I think it has the potential to be helpful for some people,” says Earp. “I think there are lots of people who will be uncomfortable with the idea that an artificial system should be involved in any way with their decision making with the stakes being what they are.”

A controversial Chinese CRISPR scientist is still hopeful about embryo gene editing. Here’s why.

By: Zeyi Yang
31 July 2024 at 12:00

This story first appeared in China Report, MIT Technology Review’s newsletter about technology in China. Sign up to receive it in your inbox every Tuesday.

Back in 2018, it was my colleague Antonio Regalado, senior editor for biomedicine, who broke the story that a Chinese scientist named He Jiankui had used CRISPR to edit the genes of live human embryos, leading to the first gene-edited babies in the world. The news made He (or JK, as he prefers to be called) a controversial figure across the world, and just a year later, he was sentenced to three years in prison by the Chinese government, which deemed him guilty of illegal medical practices.

Last Thursday, JK, who was released from prison in 2022, sat down with Antonio and Mat Honan, our editor in chief, for a live broadcast conversation on the experiment, his current situation, and his plans for the future.

If you subscribe to MIT Technology Review, you can watch a recording of the conversation or read the transcript here. But if you don’t yet subscribe (and do consider it—I’m biased, but it’s worth it), allow me to recap some of the highlights of what JK shared.

His life has been eventful since he came out of prison. JK sought to live in Hong Kong but was rejected by its government; he publicly declared he would set up a nonprofit lab in Beijing, but that hasn’t happened yet; he was hired to lead a genetic-medicine research institution at Wuchang University of Technology, a private university in Wuhan, but he seems to have been let go again. Now, according to Stat News, he has relocated to Hainan, China’s southernmost island province, and started a lab there.

During the MIT Technology Review conversation, JK confirmed that he’s currently in Hainan and working on using gene-editing technology to cure genetic diseases like Duchenne muscular dystrophy (DMD). 

He’s currently funded by private donations from Chinese and American companies, although he refused to name them. Some have even offered to pay him to travel to obscure countries with lax regulations to continue his previous work, but he turned them down. He would much prefer to return to academia to do research, JK said, but he can still conduct scientific research at a private company. 

For now, he’s planning to experiment only on mice, monkeys, and nonviable human embryos, JK said.

His experiment in 2018 inspired China to come out with regulations that explicitly forbid gene editing for reproductive uses. Today, implanting an edited embryo into a human is a crime subject to up to seven years in prison. JK repeatedly said all his current work will “comply with all the laws, regulations, and international ethics” but shied away from answering a question on what he thinks regulation around gene editing should look like.

However, he is hopeful that society will come around one day and accept embryo gene editing as a form of medical treatment. “As humans, we are always conservative. We are always worried about new things, and it takes time for people to accept new technology,” he said. He believes this lack of societal acceptance is the biggest obstacle to using CRISPR for embryo editing.

Other than DMD, another disease for which JK is currently working on gene-editing treatments is Alzheimer’s. And there’s a personal reason. “I decided to do Alzheimer’s disease because my mother has Alzheimer’s. So I’m going to have Alzheimer’s too, and maybe my daughter and my granddaughter. So I want to do something to change it,” JK said. He said his interest in embryo gene editing was never about trying to change human evolution, but about changing the lives of his family and the patients who have come to him for help.

His idea for Alzheimer’s treatment is to modify one letter in the human DNA sequence to simulate a natural mutation found in some Icelandic and Scandinavian people, which previous research found could be related to a lower chance of getting Alzheimer’s disease. JK said it would take only about two years to finish the basic research for this treatment, but he won’t go into human trials with the current regulations. 

He compares these gene-editing treatments to vaccines that everyone will be able to get easily in the future. “I would say in 50 years, like in 2074, embryo gene editing will be as common as IVF babies to prevent all the genetic diseases we know today. So the babies born at that time will be free of genetic disease,” he said. 

For all that he’s been through, JK seems pretty optimistic about the future of embryo gene editing. “I believe society will eventually accept that embryo gene editing is a good thing because it improves human health. So I’m waiting for society to accept that,” he said.

Do you agree with his vision of embryo gene editing as a universal medical treatment in the future? I’d love to hear your thoughts. Write to me at zeyi@technologyreview.com.


Now read the rest of China Report

Catch up with China

1. There’s a new buzz phrase in China’s latest national economy blueprint: “new productive forces.” It just means the country is still invested in technology-driven economic growth. (The Economist $

2. For the first time ever, Chinese scientists found water in the form of hydrated minerals from lunar soil samples retrieved in 2020. (Sixth Tone)

3. In June, Chinese electric-vehicle brands accounted for 11% of the European EV market, reaching a new record. But tariffs that went into effect in July could stop that trend. (Bloomberg $)

4. Chinese companies are supplying precision parts for weapons to Russia through a Belarusian defense contractor. (Nikkei Asia $)

5. China is looking for international buyers for its first home-grown passenger jet, the C919. Airlines in Southeast Asian countries like Indonesia and Brunei are the most likely customers. (South China Morning Post $)

6. Hundreds of Temu suppliers protested at the headquarters of the company in Guangzhou. They said the platform is subjecting the suppliers to unfair penalties for consumer complaints. (Bloomberg $)

Lost in translation

Since Russia tightened its import regulations early this year, the once-lucrative business of smuggling Chinese electric vehicles has almost vanished, according to the Chinese publication Lifeweek. Previously, traders could leverage the high demand for Chinese EVs in Russia and the low tariffs in transit countries in Central Asia to reap huge profits. For example, one businessman earned 870,000 RMB (about $120,000) through one batch export of 12 cars in December.

But new policies in Russia drastically increased import duties and enforced stricter vehicle registration. Chinese carmakers like BYD and XPeng also saw the opportunity to set up licensed operations in Central Asia to cater to this market. These changes transformed a profitable business into a barely sustainable one, and traders have been forced to adapt or exit the market.

One more thing

To prevent drivers from falling asleep, some highways in China have installed laser equipment that light up the night sky with red, blue, and green rays to attract attention and keep people awake. This looks straight out of a sci-fi novel but has been in use in over 10 Chinese provinces since 2022, according to the company that made the system.

Controversial CRISPR scientist promises “no more gene-edited babies” until society comes around

He Jiankui, the Chinese biophysicist whose controversial 2018 experiment led to the birth of three gene-edited children, says he’s returned to work on the concept of altering the DNA of people at conception, but with a difference. 

This time around, he says, he will restrict his research to animals and nonviable human embryos. He will not try to create a pregnancy, at least until society comes to accept his vision for “genetic vaccines” against common diseases.

“There will be no more gene-edited babies. There will be no more pregnancies,” he said during an online roundtable discussion hosted by MIT Technology Review, during which He answered questions from biomedicine editor Antonio Regalado, editor in chief Mat Honan, and our subscribers.

During the interview, He defended his past research and said the “only regret” he had was the difficulties he had caused to his wife and two daughters. He spent three years in prison after a court found him guilty of breaking regulations, but since his release in 2022 he has sought to stage a scientific comeback.

He says he currently has a private lab in the city of Sanya, in Hainan province, where he works on gene therapy for rare disease as well as laboratory tests to determine how, one day, babies could be born resistant to ever developing Alzheimer’s disease.

The Chinese scientist said he’s receiving financial support from individuals in the US and China, and from Chinese companies, and has received an offer to form a research company in Silicon Valley. He declined to name his investors.

Read the full transcript of the event below.


Mat Honan: Hello, everybody. Thanks for joining us today. My name is Mat Honan. I’m the editor in chief here at MIT Technology Review. I’m really thrilled to host what’s going to be, I think, a great discussion today. I’m joined by Antonio Regalado, our senior editor for biomedicine, and He Jiankui, who goes by the name JK. 

JK is a biophysicist, He’s based in China, and JK used CRISPR to edit the genes of human embryos, which ultimately resulted in the first children born whose DNA had been tailored using gene editing. Welcome to you both.

To our audience tuning in today, I wanted to let you know if you’ve got questions for us, please do ask them in the chat window. We’ve got a packed discussion planned, but we will get to as many of those as we can throughout. Antonio, I think I’m going to start with you, if we can. You’re the one who broke this story six years ago. Why don’t you set the stage for what we’re going to be talking about here today, and why it’s important.

Antonio Regalado: Mat, thank you.

The subject is genome editing. Of course, it’s a technology for changing the DNA inside of individual cells, including embryos. It’s hard to overstate its importance. I put it up there with the invention of the transistor and artificial intelligence.

And why do I think so? Well, genome editing gives humans control, or at least the ability to try and direct the very processes that brought us about as a species. So it’s that profound.

Getting to JK’s story. In 2018 we had a scoop—he might call it a leak—in which we described his experiment, which, as Mat said, was to edit human embryos to delete a particular gene called CCR5 with the goal of rendering the children, of which there were three, immune to HIV, which their fathers had and which is a source of stigma in China. So that was the project.

Of course our story set off, you know, immediate chaos. Voices were raised all over the world—many critical, a few in support. But one of the consequences was that JK and his team, the parents and the doctors, did not have the ability to tell their own story—in JK’s case because he was, in fact, detained and has completed a term in prison. So we’re happy to have him here to answer my questions and those of our subscribers. JK, thank you for being here. 

Several people, including Professor Michael Waitzkin of Duke University, would like to know what the situation is with the three children. What do you know about their health, and where is this information coming from?

He Jiankui: Lulu, Nana, and the third gene-edited baby—they were healthy and are living a normal, peaceful, undisturbed life. They are as happy as any other people, any other children in kindergarten. I have maintained a constant connection with their parents.

Antonio Regalado: I see. JK, on X, you recently made a comment about one of the parents—now a single mother—who you said you were supporting financially. What can you tell us about that situation? What kind of obligations do you have to these children, and are you able to meet those obligations?

He Jiankui: So the third genetic baby—the parents divorced, so the girl is with her mother. You know, a single mother, a single-parent family—life is not easy. So in the last two years, I’m providing some financial support, but I’m not sure it’s the right thing to do or whether it’s ethical, because I’m a scientist or a doctor, and she is a volunteer or patient. For scientists or doctors to provide financial support to the volunteer or patient—it correct? Is it the right thing to do, and is it ethical? That’s something I’m not sure of. So I have this question, actually.

Antonio Regalado: Interesting. Well, there’s a lot of ethical dilemmas here, and one of them is about your publications, the scientific publications which you prepared and which describe the experiment. So a two-part question for you. 

First of all, setting the ethics aside, some people who criticized your experiment still want to know the result. They would like to know if it worked. Are the children resistant to HIV or not? So part one of the question is: Are you able to make a measurement on their blood, or is anybody able to make a measurement that would show if the experiment worked? And second part of the question: Do you intend to publish your paper, including as a preprint or as a white paper?

He Jiankui: So I always believe that scientific research must be open and transparent, so I am willing to publish my papers, which I wrote six years ago.

It was rejected by Nature, for some reason. But even today, I would say that I’m willing to publish these two papers in a peer-reviewed journal. It has to be peer-reviewed; that is the standard way to publish in a paper.

The other thing is whether the baby is resistant to HIV. Actually, several years ago, when we designed the experiment, we already collected the [umbilical] cord blood when they were born. We collected cord blood from the babies, and our original experiment design was to challenge the cord blood with the HIV virus to see whether they are actually resistant to HIV. But this experiment never happened, because when the news broke out, there has been no way to do any experiment since then. 

I would say I am happy to share my results to the whole world.

Mat Honan: Thanks, Antonio. Let me start with a question from a reader, Karen Jones. She asks, with so much controversy around breaking the law in China, she wanted to know about your credibility. And it reminds me of something that I’m curious about myself. What are the professional consequences of your work? Are you still able to work in China? Are you still able to do experiments with CRISPR?

He Jiankui: Yes, I continue my research in the lab. I have a lab in Sanya [Hainan province], and also previously a lab in Wuhan.

My current work is on gene editing to cure genetic disease such as Duchenne muscular dystrophy and several other genetic diseases. And all this is done by somatic gene therapy, which means this is not working on human embryos.

Mat Honan: I think that leads [to] a question that we have from another reader, Sophie, who wanted to know if you plan to do more gene editing in humans.

He Jiankui: So I have proposed a research project using human embryo gene editing to prevent Alzheimer’s disease. I posted this proposal last year on Twitter. So my goal is we’re going to test the embryo gene editing in mice and monkeys, and in human nonviable embryos. Again, it’s nonviable embryos. There will be no more gene-edited babies. There will be no more pregnancies. We’re going to stop at human nonviable embryos. So our goal is to see if we could prevent Alzheimer’s for offspring or the next generation, because Alzheimer’s has no cure currently.

Mat Honan: I see. And then my last question before I move it back to Antonio. I’m curious if you plan to continue working in China, or if you think that you will ultimately relocate somewhere else. Do you plan to do this work elsewhere? 

He Jiankui: Some investors from Silicon Valley proposed to invest in me to start a company in the United States, with research done both in the United States and in China. This is a very interesting proposal, and I am considering it. I would be happy to work in the United States if there’s good opportunity.

Mat Honan: Let me just remind our readers—if you do have questions, you could put them in the chat and we will try to get to them. But in the meantime, Antonio, back over to you, please.

Antonio Regalado: Definitely, I’m curious about what your plans are. Yesterday Stat News reported some of the answers to today’s questions. They said that you have established yourself in the province of Hainan in China. So what kind of facility do you have there? Do you have a lab, or are you doing research? And where is the financial support coming from?

He Jiankui: So here I have an independent private research lab with a few people. We get funding from both the United States and also from China to support me to carry on the research on the gene therapy for Duchenne muscular dystrophy, for high cholesterol, and some other genetic diseases. 

Antonio Regalado: Could you be more specific about where the funding is coming from? I mean, who is funding you, or what types of people are funding this research? 

He Jiankui:  There are people in the United States who made a donation to me. I’m not going to disclose the name and amount. Also the Chinese people, including some companies, are providing funding to me.

Antonio Regalado: I wonder if you could sketch out for us—I know people are interested—where you think all this [is] going to lead. With a long enough time frame—10 years, 20 years, 30 years—do you think the technology will be in use to change embryos, and how will it be used? What is the larger plan that you see?

He Jiankui: I would say in 50 years, like in 2074, embryo gene editing will be as common as IVF babies to prevent all the genetic disease we know today. So the babies born at that time will be free of genetic disease.

Antonio Regalado: You’re working on Alzheimer’s. This is a gene variant that was described in 2012 by deCode Genetics. This is one of these variants that is protective—it would protect against Alzheimer’s. Strictly speaking, it’s not a genetic disease. So what about the role of protective variants, or what could be called improvements to health?

He Jiankui: Well, I decided to do Alzheimer’s disease because my mother has Alzheimer’s. So I’m going to have Alzheimer’s too, and maybe my daughter and my granddaughter. So I want to do something to change it. 

There’s no cure for Alzheimer’s today. I don’t know for how many years that will be true. But what we can do is: Since some people in Europe are at a very low risk [for] Alzheimer’s, why don’t we just make some modifications so our next generation also have this protective allele, so they have a low risk of Alzheimer’s or maybe are free of Alzheimer’s. That’s my goal.

Antonio Regalado: Well, a couple of questions. Will any country permit this? I mean, genome editing, producing genome-edited children, was made formally illegal in China, I think in 2021. And it’s prohibited in the United States in another way. So where can you go, or where will you go to further this technology?

He Jiankui:  I believe society will eventually accept that embryo gene editing is a good thing because it improves human health. So I’m waiting for society to accept that. My current research is not doing any gene-edited baby or any pregnancy. What I do is a basic research in mice, monkeys, or human nonviable embryos. We only do basic research, but I’m certain that one day society will accept embryo gene editing.

Mat Honan: That raises a question for me. We’re talking about HIV or Alzheimer’s, but there are other aspects of this as well. You could be doing something where you’re optimizing for intelligence or optimizing for physical performance. And I’m curious where you think this leads, and if you think that there is a moral issue around, say, parents who are allowed to effectively design their children by editing their genes.

He Jiankui: Well, I advise you to read the paper I published in 2018 in the CRISPR Journal. It’s my personal thinking of the ethical guidelines for embryo gene editing. It was retracted by the CRISPR Journal. But I proposed that the embryo gene editing should only be used for disease. It should never be used for a nontherapeutic purpose, like making people smarter, stronger, or beautiful.

Mat Honan:  Do you not think that becomes inevitable, though, if gene-editing embryos becomes common?

He Jiankui: Society will decide that. 

Mat Honan: Moving on: You said that you were only working with animals or with nonviable embryos. Are there other people who you think are working with human embryos, with viable human embryos, or that you know of, or have heard about, continuing with that kind of work?

He Jiankui: Well, I don’t know yet. Actually, many scientists are keeping their distance from me. But there are people from somewhere, an island in Honduras or maybe some small East European country, inviting me to do that. And I refused. I refused. I will only do research in the United States and China or other major countries.

Mat Honan: So the short answer is, that sounded almost like a yes to me? You think that it is happening? Is that correct?

He Jiankui: I’m not answering that. 

Mat Honan: Okay, fair enough. I’m going to move on to some reader questions here while we have the time. You mentioned basically having society come around to seeing that this is necessary work. Ravi asks: What type of regulatory framework do you believe is necessary to ensure responsible development and applications of this technology? You had mentioned limiting to therapeutic purposes. Are there other frameworks you think should be in place?

He Jiankui: I’m not answering this question.

Mat Honan: What you think should be in place in terms of regulation?

He Jiankui: Well, there are a lot of regulations. I personally comply with all the laws, regulations, and international ethics for my work. 

Mat Honan: I see. Go ahead, Antonio. 

Antonio Regalado: Let me just jump in with a related question. You talked about offers of funding from the United States, from Silicon Valley—offers of funding to support you. Is that to create a company, and how would accepting investment from entrepreneurs to start a company change public perception about the technology?

He Jiankui: Well, it was designed as a company registered in the United States and headquartered in the United States.

Antonio Regalado: But do you think that starting a company will make people more enthusiastic or interested in this technology?

He Jiankui: Well, for me, I would certainly be more happy to get an offer from the United States [if it came] from a university or research institution. I would be happy for that, but it’s not happening. But, well, a company started doing some basic research, and that’s also a good contribution.

Antonio Regalado: Getting back to the initial experiment—obviously, it’s been criticized a great deal. And I am just wondering, looking back, which of those criticisms do you accept? Which do you disagree with? Do you have regrets about the experiment?

He Jiankui: The only regret I have is to my family, my wife and my two daughters. In the last few years, they are living in a very difficult situation. I won’t let that happen again.

Antonio Regalado: The technology is viewed as controversial. I’m talking about embryo editing. So it’s a little bit surprising to me that you would return to it. Surprising and interesting. So why is it that you have decided to pursue this vision, this project, despite the problems? I mean, you’re still working on it. What is your motivation?

He Jiankui: Our stance is always for us to do something to benefit mankind.

Antonio Regalado: Speaking of mankind, or humankind, I did have a question about evolution. The gene edits that you made to CCR5 and now are working on to another gene in Alzheimer’s—these are natural mutations that occur in some populations, you mentioned in Europe. They’ve been discovered through population genetics. Studies of a large number of people can find these genetic variations that are protective, or believed to be protective, against disease. In the natural course of evolution, those might spread, right? But it would take hundreds of thousands of years. So with gene editing, you can introduce such a change into an embryo, I guess, in a matter of minutes.

So the question I have is: Is this an evolutionary project? Is it human technology being used to take over from evolution?

He Jiankui: I’m not interested in evolution. Evolution takes thousands of years. I only care about the people surrounding me—my family, and also the patients who would come to find me. What I want to do is help those people, help people in this living world. I’m not interested in evolution.

Antonio Regalado: Mat, any other question from the audience you’d like to throw in?

Mat Honan: Yeah, let me get to one from Rez, who’s asking: What do you see as the major hurdles in advancing CRISPR to more general health-care use cases? What do you see as the big barriers there?

He Jiankui:  If you’re talking about somatic gene therapy, the bottleneck, of course, is delivery. Without breakthroughs in delivery technology, somatic gene therapy is heading toward a dead end. For the embryo gene editing, the bottleneck, of course, is: How long will it take people to accept new technology? Because as humans, we are always conservative. We are always worried about the new things, and it takes time for people to accept new technology. 

Mat Honan: I wanted to get a question from Robert that goes back to our earlier discussion here, which is: What was your initial motivation to take this step with the three children?

He Jiankui: So several years ago, I went to a village in the center of China where more than 30% of people are infected with HIV. Back to the 1990s, many years ago, people sold blood, and it did something [spread HIV]. When I was there, I saw that there’s a very small kindergarten, only designed for the children of HIV patients. Why did that happen? Other public schools won’t take them. I felt that there’s a kind of discrimination to these children. And what I want to do is to do something to change it. If the HIV patient—if their children are not just free from but actually immune to HIV, then it will help them to go back to the society. For me, it’s just like a vaccine. It’s one vaccine to protect them for a lifetime. 

Mat Honan: I see we’re running short on time here, and I do want to try to get to some more of our reader questions. I know Antonio has a last one as well. If you do have questions, please put them in the chat. And from Joseph, he wants to know: You say that you think that the society will come around. What do you think will be the first types of embryo DNA edits that would be acceptable to the medical community or to society at large?

He Jiankui: Very recently, a patient flew here to visit me in my office. They are a couple, they are over 40 years old. They want to have a baby and already did IVF. They have embryos, but the embryos have a problem with a chromosome. So this embryo is not good. So one thing, apparently, we could do to help them is to correct the chromosome problem so they can have a healthy embryo, so they can have children. We’re not creating any immunity to anything—it’s just to restore the health of the embryo. And I believe that would be a good start.

Mat Honan: Thank you, JK. Antonio, back over to you. 

Antonio Regalado:  JK, I’m curious about your relationship to the government in China, the central government. You were punished, but on the other hand, you’re free to continue to talk about science and do research. Does the government support you and your ideas? Are you a member of the political party? Have you been offered membership? What is your relationship to the government?

He Jiankui: Next question.

Antonio Regalado: Next question? Okay. Interesting. We’ll have to postpone that one for another day.

Mat, anything else? I think we’re coming up against time, and I’m wondering if we have reader questions. I have one here that I could ask, which is about the new technologies in CRISPR. People want to know where this technology is going, in terms of the methods. You used CRISPR to delete a gene. But CRISPR itself is constantly being improved. There are new tools. So in your lab, in your experiments, what gene-editing technology are you employing?

He Jiankui:  So six years ago, we were using the original CRISPR-Cas9 invented by Jennifer Doudna. But today, we are moving on to base editing, invented by David Liu. The base editing, it’s safe in embryos. It won’t cut the DNA or break it—just small changes. So we no longer use CRISPR-Cas9. We’re using base editing.

Antonio Regalado: And can you tell me the nature of the genetic change that you’re experimenting with or would like to make in these cells to make them resistant to Alzheimer’s? How big a change are you making with this base editor, or trying to make with it?

He Jiankui: So to make people protected against Alzheimer’s, we just need a single base change in the whole human 3 billion letters of DNA. We just change one letter of it to protect people from Alzheimer’s.

Antonio Regalado: And how soon do you think that this could be in use? I mean, it sounds interesting. If I had a child, I might want them to be immune to Alzheimer’s. So this is quite an interesting proposal. What is the time frame in years—if it works in the lab—before it could be implemented in IVF clinics?

He Jiankui: I would say there’s the basic research that could be finished in two years. I won’t move on to the human trial. That’s not my role. It’s determined by society whether to accept it or not. And that’s the ethical side. 

Antonio Regalado: A last question on this from a reader. The question is: How do you prove the benefits? Of course, you can make a genetic change. You can even create a person with a genetic change. But if it’s for Alzheimer’s, it’s going to take 70 years before you know and can prove the results. So how can you prove its medical benefit? Or how can you predict the medical benefit?

He Jiankui: So one thing is that we can observe it in the natural world. There are already thousands of people with this mutation. It helps them against Alzheimer’s. It naturally exists in the population, in humans, so that’s a natural human experiment. And also we could do it in mice. We could use Alzheimer’s model mice and then to modulate DNA to see the results.

You might argue that it takes many years to develop Alzheimer’s, but in society, we’ve done a lot with the HPV vaccine against certain women’s cancers. Cancer takes many years to happen, but they take the HPV vaccine at age eight or seven.

Mat Honan: Thank you so much. JK and Antonio, we are slightly past time here, and I’m going to go ahead and wrap it up. Thank you very much for joining us today, to both of you. And I also want to thank all of our subscribers who tuned in today. I do hope that we see you again next month at our Roundtable in August. It’s our subscriber-only series. And I hope you enjoyed today. Thanks, everybody. 

Antonio Regalado: Thank you, JK.

He Jiankui: Thank you. 

How our genome is like a generative AI model

This article first appeared in The Checkup, MIT Technology Review’s weekly biotech newsletter. To receive it in your inbox every Thursday, and read articles like this first, sign up here.

What does the genome do? You might have heard that it is a blueprint for an organism. Or that it’s a bit like a recipe. But building an organism is much more complex than constructing a house or baking a cake.

This week I came across an idea for a new way to think about the genome—one that borrows from the field of artificial intelligence. Two researchers are arguing that we should think about it as being more like a generative model, a form of AI that can generate new things.

You might be familiar with such AI tools—they’re the ones that can create text, images, or even films from various prompts. Do our genomes really work in the same way? It’s a fascinating idea. Let’s explore.

When I was at school, I was taught that the genome is essentially a code for an organism. It contains the instructions needed to make the various proteins we need to build our cells and tissues and keep them working. It made sense to me to think of the human genome as being something like a program for a human being.

But this metaphor falls apart once you start to poke at it, says Kevin Mitchell, a neurogeneticist at Trinity College in Dublin, Ireland, who has spent a lot of time thinking about how the genome works.

A computer program is essentially a sequence of steps, each controlling a specific part of development. In human terms, this would be like having a set of instructions to start by building a brain, then a head, and then a neck, and so on. That’s just not how things work.

Another popular metaphor likens the genome to a blueprint for the body. But a blueprint is essentially a plan for what a structure should look like when it is fully built, with each part of the diagram representing a bit of the final product. Our genomes don’t work this way either.

It’s not as if you’ve got a gene for an elbow and a gene for an eyebrow. Multiple genes are involved in the development of multiple body parts. The functions of genes can overlap, and the same genes can work differently depending on when and where they are active. It’s far more complicated than a blueprint.

Then there’s the recipe metaphor. In some ways, this is more accurate than the analogy of a blueprint or program. It might be helpful to think about our genes as a set of ingredients and instructions, and to bear in mind that the final product is also at the mercy of variations in the temperature of the oven or the type of baking dish used, for example. Identical twins are born with the same DNA, after all, but they are often quite different by the time they’re adults.

But the recipe metaphor is too vague, says Mitchell. Instead, he and his colleague Nick Cheney at the University of Vermont are borrowing concepts from AI to capture what the genome does. Mitchell points to generative AI models like Midjourney and DALL-E, both of which can generate images from text prompts. These models work by capturing elements of existing images to create new ones.

Say you write a prompt for an image of a horse. The models have been trained on a huge number of images of horses, and these images are essentially compressed to allow the models to capture certain elements of what you might call “horsiness.” The AI can then construct a new image that contains these elements.

We can think about genetic data in a similar way. According to this model, we might consider evolution to be the training data. The genome is the compressed data—the set of information that can be used to create the new organism. It contains the elements we need, but there’s plenty of scope for variation. (There are lots more details about the various aspects of the model in the paper, which has not yet been peer-reviewed.)

Mitchell thinks it’s important to get our metaphors in order when we think about the genome. New technologies are allowing scientists to probe ever deeper into our genes and the roles they play. They can now study how all the genes are expressed in a single cell, for example, and how this varies across every cell in an embryo.

“We need to have a conceptual framework that will allow us to make sense of that,” says Mitchell. He hopes that the concept will aid the development of mathematical models that might help us better understand the intricate relationships between genes and the organisms they end up being part of—in other words, exactly how components of our genome contribute to our development.


Now read the rest of The Checkup

Read more from MIT Technology Review’s archive:

Last year, researchers built a new human genome reference designed to capture the diversity among us. They called it the “pangenome,” as Antonio Regalado reported.

Generative AI has taken the world by storm. Will Douglas Heaven explored six big questions that will determine the future of the technology.

A Disney director tried to use AI to generate a soundtrack in the style of Hans Zimmer. It wasn’t as good as the real thing, as Melissa Heikkilä found.

Melissa has also reported on how much energy it takes to create an image using generative AI. Turns out it’s about the same as charging your phone. 

What is AI? No one can agree, as Will found in his recent deep dive on the topic.

From around the web

Evidence from more than 1,400 rape cases in Maryland, some from as far back as 1977, are set to be processed by the end of the year, thanks to a new law. The state still has more than 6,000 untested rape kits. (ProPublica)

How well is your brain aging? A new tool has been designed to capture a person’s brain age based on an MRI scan, and which accounts for the possible effects of traumatic brain injuries. (NeuroImage)

Iran has reported the country’s first locally acquired cases of dengue, a viral infection spread by mosquitoes. There are concerns it could spread. (WHO)

IVF is expensive, and add-ons like endometrial scratching (which literally involves scratching the lining of the uterus) are not supported by strong evidence. Is the fertility industry profiting from vulnerability? (The Lancet)

Up to 2 million Americans are getting their supply of weight loss drugs like Wegovy or Zepbound from compounding pharmacies. They’re a fraction of the price of brand-name Big Pharma drugs, but there are some safety concerns. (KFF Health News)

Why we need safeguards against genetic discrimination

This article first appeared in The Checkup, MIT Technology Review’s weekly biotech newsletter. To receive it in your inbox every Thursday, and read articles like this first, sign up here.

A couple of years ago, I spat into a little plastic tube, stuck it in the post, and waited for a company to analyze markers on my DNA to estimate how biologically old I am. It’s not the first time I’ve shared my genetic data for a story. Over a decade ago, I shared a DNA sample with a company that promised to tell me about my ancestry.

Of course, I’m not the only one. Tens of millions of people have shipped their DNA off to companies offering to reveal clues about their customers’ health or ancestry, or even to generate tailored diet or exercise advice. And then there are all the people who have had genetic tests as part of their clinical care, under a doctor’s supervision. Add it all together, and there’s a hell of a lot of genetic data out there.

It isn’t always clear how secure this data is, or who might end up getting their hands on it—and how that information might affect people’s lives. I don’t want my insurance provider or my employer to make decisions about my future on the basis of my genetic test results, for example. Scientists, ethicists and legal scholars aren’t clear on the matter either. They are still getting to grips with what genetic discrimination entails—and how we can defend against it.

If we’re going to protect ourselves from genetic discrimination, we first have to figure out what it is. Unfortunately, no one has a good handle on how widespread it is, says Yann Joly, director of the Centre of Genomics and Policy at McGill University in Quebec. And that’s partly because scientists keep defining it in different ways. In a paper published last month, Joly and his colleagues listed 12 different definitions that have been used in various studies since the 1990s. So what is it?

“I see genetic discrimination as a child of eugenics practices,” says Joly. Modern eugenics, which took off in the late 19th century, was all about limiting the ability of some people to pass on their genes to future generations. Those who were considered “feeble minded” or “mentally defective” could be flung into institutions, isolated from the rest of the population, and forced or coerced into having procedures that left them unable to have children. Disturbingly, some of these practices have endured. In the fiscal years 2005-2006 and 2012-2013, 144 women in California’s prisons were sterilized—many without informed consent.

These cases are thankfully rare. In recent years, ethicists and policymakers have been more worried about the potential misuse of genetic data by health-care and insurance providers. There have been instances in which people have been refused health insurance or life insurance on the basis of a genetic result, such as one that predicts the onset of Huntington’s disease. (In the UK, where I live, life insurance providers are not meant to ask for a genetic test or use the results of one—unless the person has tested positive for Huntington’s.)

Joly is collecting reports of suspected discrimination in his role at the Genetic Discrimination Observatory, a network of researchers working on the issue. He tells me that in one recent report, a woman wrote about her experience after she had been referred to a new doctor. This woman had previously taken a genetic test that revealed she would not respond well to certain medicines. Her new doctor told her he would only take her on as a patient if she first signed a waiver releasing him of any responsibility over her welfare if she didn’t follow the advice generated by her genetic test.

“It’s unacceptable,” says Joly. “Why would you sign a waiver because of a genetic predisposition? We’re not asking people with cancer to [do so]. As soon as you start treating people differently because of genetic factors … that’s genetic discrimination.”

Many countries have established laws to protect people from these kinds of discrimination. But these laws, too, can vary hugely both when it comes to defining what genetic discrimination is and to how they safeguard against it. The law in Canada focuses on DNA, RNA, and chromosome tests, for example. But you don’t always need such a test to know if you’re at risk for a genetic disease. A person might have a family history of a disease or already be showing symptoms of it.

And then there are the newer technologies. Take, for example, the kind of test that I took to measure my biological age. Many aging tests measure either chemical biomarkers in the body or epigenetic markers on the DNA—not necessarily the DNA itself. These tests are meant to indicate how close a person is to death. You might not want your life insurance provider to know or act on the results of those, either.

Joly and his colleagues have come up with a new definition. And they’ve kept it broad. “The narrower the definition, the easier it is to get around it,” he says. He wanted to avoid excluding the experiences of any people who feel they’ve experienced genetic discrimination. Here it is:

“Genetic discrimination involves an individual or a group being negatively treated, unfairly profiled or harmed, relative to the rest of the population, on the basis of actual or presumed genetic characteristics.

It will be up to policymakers to decide how to design laws around genetic discrimination. And it won’t be simple. The laws may need to look different in different countries, depending on what technologies are available and how they are being used. Perhaps some governments will want to ensure that residents have access to technologies, while other may choose to limit access. In some cases, a health-care provider may need to make decisions about a person’s care based on their genetic results.

In the meantime, Joly has advice for anyone worried about genetic discrimination. First, don’t let such concerns keep you from having a genetic test that you might need for your own health. As things stand, the risk of being discriminated against on the basis of these tests is still quite small.

And when it comes to consumer genetic testing, it’s worth looking closely at the company’s terms and conditions to find out how your data might be shared or used. It is also useful to look up the safeguarding laws in your own country or state, which can give you a good idea of when you’re within your rights to refuse to share your data.

Shortly after I received the results from my genetic tests, I asked the companies involved to delete my data. It’s not a foolproof approach—last year, hackers stole personal data on 6.9 million 23andMe customers—but at least it’s something. Just this week I was offered yet another genetic test. I’m still thinking on it.


Now read the rest of The Checkup

Read more from MIT Technology Review’s archive:

As of 2019, more than 26 million people had undertaken a consumer genetic test, as my colleague Antonio Regalado found. The number is likely to have grown significantly since then.
 
Some companies say they can build a picture of what a person looks like on the basis of DNA alone. The science is questionable, as Tate Ryan-Mosley found when she covered one such company.
 
The results of a genetic test can have profound consequences, as Golda Arthur found when a test revealed she had a genetic mutation that put her at risk of ovarian cancer. Arthur, whose mother developed the disease, decided to undergo the prophylactic removal of her ovaries and fallopian tubes. 
 
Tests that measure biological age were selected by readers as our 11th breakthrough technology of 2022. You can read more about them here.
 
The company that gave me an estimate of my biological age later reanalyzed my data (before I had deleted it). That analysis suggested that my brain and liver were older than they should be. Great.

From around the web:

Over the past few decades, doctors have implanted electrodes deep into the brains of a growing number of people, usually to treat disorders like epilepsy and Parkinson’s disease. We still don’t really know how they work, or how long they last. (Neuromodulation)

A ban on female genital mutilation will be upheld in the Gambia following a vote by the country’s National Assembly. The decision “reaffirm[s the country’s] commitments to human rights, gender equality, and protecting the health and well-being of girls and women,” directors of UNICEF, UNFPA, WHO, UN Women, and the UN High Commissioner for Human Rights said in a joint statement. (WHO)

Weight-loss drugs that work by targeting the GLP-1 receptor, like Wegovy and Saxena, are in high demand—and there’s not enough to go around. Other countries could follow Switzerland’s lead to make the drugs more affordable and accessible, but only for the people who really need them. (JAMA Internal Medicine)

J.D. Vance, Donald Trump’s running mate, has ties to the pharmaceutical industry and has an evolving health-care agenda. (STAT)

Psilocybin, the psychedelic compound in magic mushrooms, can disrupt the way regions of our brains communicate with each other. And the effect can last for weeks. (The Guardian)

IVF alone can’t save us from a looming fertility crisis

This article first appeared in The Checkup, MIT Technology Review’s weekly biotech newsletter. To receive it in your inbox every Thursday, and read articles like this first, sign up here. 

I’ve just learned that July 11 is World Population Day. There are over 8 billion of us on the planet, and there’ll probably be 8.5 billion of us by 2030. We’re continually warned about the perils of overpopulation and the impact we humans are having on our planet. So it seems a bit counterintuitive to worry that, actually, we’re not reproducing enough.

But plenty of scientists are incredibly worried about just that. Improvements in health care and sanitation are helping us all lead longer lives. But we’re not having enough children to support us as we age. Fertility rates are falling in almost every country.

But wait! We have technologies to solve this problem! IVF is helping to bring more children into the world than ever, and it can help compensate for the fertility problems faced by older parents! Unfortunately, things aren’t quite so simple. Research suggests that these technologies can only take us so far. If we want to make real progress, we also need to work on gender equality.

Researchers tend to look at fertility in terms of how many children the average woman has in her lifetime. To maintain a stable population, this figure, known as the total fertility rate (TFR), needs to be around 2.1.

But this figure has been falling over the last 50 years. In Europe, for example, women born in 1939 had a TFR of 2.3—but the figure has dropped to 1.7 for women born in 1981 (who are 42 or 43 years old by now). “We can summarize [the last 50 years] in three words: ‘declining,’ ‘late,’ and ‘childlessness,’” Gianpiero Dalla Zuanna, a professor of demography at the University of Padua in Italy, told an audience at the annual meeting of the European Society of Human Reproduction and Embryology earlier this week.

There are a lot of reasons behind this decline. Around one in six people is affected by infertility, and globally, many people aren’t having as many children as they would like. On the other hand, more people are choosing to live child-free. Others are delaying starting a family, perhaps because they face soaring living costs and have been unable to afford their own homes. Some hesitate to have children because they are concerned about the future. With the ongoing threat of global wars and climate change, who can blame them? 

There are financial as well as social consequences to this fertility crisis. We’re already seeing fewer young people supporting a greater number of older ones. And it’s not sustainable.

“Europe today has 10% of the population, 20% of gross domestic product, and 50% of the welfare expense of the world,” Dalla Zuanna said at the meeting. Twenty years from now, there will be 20% fewer people of reproductive age than there are today, he warned.

It’s not just Europe that will be affected. The global TFR in 2021 was 2.2—less than half the figure in 1950, when it was 4.8. By one recent estimate, the global fertility rate is declining at a rate of 1.1% per year. Some countries are facing especially steep declines: In 2021, the TFR in South Korea was just 0.8—well below the 2.1 needed to maintain the population. If this decline continues, we can expect the global TFR to hit 1.83 by 2050 and 1.59 by 2100.

So what’s the solution? Fertility technologies like IVF and egg freezing have been touted as one potential remedy. More people than ever are using these technologies to conceive. An IVF baby is born somewhere in the world every 35 seconds. And IVF can indeed help us overcome some fertility issues, including those that can arise for people starting a family after the age of 35. IVF is already involved in 5% to 10% of births in high-income countries. “IVF has got to be our solution, you would think,” said Georgina Chambers, who directs the National Perinatal Epidemiology and Statistics Unit at UNSW Sydney in Australia, in another talk at ESHRE.

Unfortunately, technology is unlikely to solve the fertility crisis anytime soon, as Chambers’s own research shows. A handful of studies suggest that the use of assisted reproductive technologies (ART) can only increase the total fertility rate of a country by around 1% to 5%. The US sits at the lower end of this scale—it is estimated that in 2020, the use of ART increased the fertility rate by about 1.3%. In Australia, however, ART boosted the fertility rate by 5%.

Why the difference? It all comes down to accessibility. IVF can be prohibitively expensive in the US—without insurance covering the cost, a single IVF cycle can cost around half a person’s annual disposable income. Compare that to Australia, where would-be parents get plenty of government support, and an IVF cycle costs just 6% of the average annual disposable income.

In another study, Chambers and her colleagues have found that ART can help restore fertility to some extent in women who try to have children later in life. It’s difficult to be precise here, because it’s hard to tell whether some of the births that followed IVF would have happened eventually without the technology.

Either way, IVF and other fertility technologies are not a cure-all. And overselling them as such risks encouraging people to further delay starting a family, says Chambers. There are other ways to address the fertility crisis.

Dalla Zuanna and his colleague Maria Castiglioni believe that countries with low fertility rates, like their home country Italy, need to boost the number of people of reproductive age. “The only possibility [of achieving this] in the next 20 years is to increase immigration,” Castiglioni told an audience at ESHRE.

Several countries have used “pronatalist” policies to encourage people to have children. Some involve financial incentives: Families in Japan are eligible for one-off payments and monthly allowances for each child,as part of a scheme that was recently extended. Australia has implemented a similar “baby bonus.”

“These don’t work,” Chambers said. “They can affect the timing and spacing of births, but they are short-lived. And they are coercive: They negatively affect gender equity and reproductive and sexual rights.”

But family-friendly policies can work. In the past, the fall in fertility rates was linked to women’s increasing participation in the workforce. That’s not the case anymore. Today, higher female employment rates are linked to higher fertility rates, according to Chambers. “Fertility rises when women combine work and family life on an equal footing with men,” she said at the meeting. Gender equality, along with policies that support access to child care and parental leave, can have a much bigger impact.

These policies won’t solve all our problems. But we need to acknowledge that technology alone won’t solve the fertility crisis. And if the solution involves improving gender equality, surely that’s a win-win.


Now read the rest of The Checkup

Read more from MIT Technology Review’s archive:

My colleague Antonio Regalado discussed how reproductive technology might affect population decline with Martin Varsavsky, director of the Prelude Fertility network of clinics, in a roundtable on the future of families earlier this year.

There are new fertility technologies on the horizon. I wrote about the race to generate lab-grown sperm and eggs from adult skin cells, for example. Scientists have already created artificial eggs and sperm from mouse cells and used them to create mouse pups. Artificial human sex cells are next.

Advances like these could transform the way we understand parenthood. Some researchers believe we’re not far being able to create babies with multiple genetic parents or none at all, as I wrote in a previous edition of The Checkup.

Elizabeth Carr was America’s first IVF baby when she was born in 1981. Now she works at a company that offers genetic tests for embryos, enabling parents to choose those with the highest health scores.

Some people are already concerned about maintaining human populations beyond planet Earth. The Dutch entrepreneur Egbert Edelbroek wants to try IVF in space. “Humanity needs a backup plan,” he told Scott Solomon in October last year. “If you want to be a sustainable species, you want to be a multiplanetary species.”

We have another roundtable discussion coming up with Antonio later this month. You can join him for a discussion about CRISPR and the future of gene editing. “CRISPR Babies: Six years later” takes place on Thursday, July 25, and is a subscriber-only online event. You can register for free.

From around the web

When a Bitcoin mining facility moved into the Granbury area in Texas, local residents started complaining of strange new health problems. They believe the noisy facility might be linked to their migraines, panic attacks, heart palpitations, chest pain, and hypertension. (Time)

In the spring of 1997, 20 volunteers agreed to share their DNA for the Human Genome Project, an ambitious effort to publish a reference human genome. They were told researchers expected that “no more than 10% of the eventual DNA sequence will have been obtained from [each person’s] DNA.” But when the draft was published in 2001, nearly 75% of it came from just one person. Ashley Smart reports on the ethical questions surrounding the project. (Undark)

How can you make cultured meat taste more like the real thing? Scientists have developed “flavor scaffolds” that can release a meaty taste when cultured meat is cooked. The resulting product looks like a meaty pink jelly. Bon appétit! (Nature)

Doctors can continue their medical education by taking courses throughout their careers. Some of these are funded by big tobacco companies. They really shouldn’t be, argue these doctors from Stanford and the University of California. (JAMA)

“Skin care = brain care”? Maybe, if you believe the people behind the burgeoning industry of neurocosmetics. (The Atlantic)

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